Yesterday when we went to see Mom, open presents and sing Christmas caroles, I also went through the previous day happenings. Christmas Eve is the big day in our family. My husband and I as well as our son's and their families stopped after church and prayed with her and opened her presents. Then went to the house opened presents, sang Christmas caroles and helped played a lot of games. In telling her of all of this, as I do each day and did yesterday, she looked at me and said "I wish I could be you" This brought tears to my eyes, and a huge sadness. I knew what she meant. I wish I could do anything I wanted to, I wish I could have a complete life, I wish I didn't have Dementia!! That was all she could articulate, however.
Everyone loves the Holidays, but it can be a mixed bag. We love the family time. giving the special gifts and the wassail!! It often times brings a bit of nostalgia and reminders of Christmases past. It brings a realization that no matter how "perfect" the day is it is never the same as it once was. Dementia takes away some of our most cherished memories, traditions, and even people. The Holidays certainly brings all of this to the surface. I believe the best we can do is enjoy the good and try not dwell on those less pleasant memories. Happy Holidays to all!!
May God keep you in the palm of Her hand.
Sunday, December 26, 2010
Sunday, November 28, 2010
Holidays-Stress and Joy
I just got back from putting out Mom's Xmas Decorations. This is always a time when Mom seems to get more sentimental and also more demanding. I also become more sentimental but more sensitive. This is not a great combination. I remember one of the last Christmas Holidays I was leaving after 20-25 minutes and I usually stay an hour. She turned to me and said "if you loved me you would stay longer!" Now I know it was the "dementia talking" not Mom, but somehow I am reliving that and other moments from past holidays. I understand intellectually that I need to move forward, but this is easier said than done!
Holidays can be stressful when your loved one has Alzheimer's or another dementia and I will discuss some of the things you can do help with this stress. Today, however, I want to just begin with asking all of us to get into the right frame of mind. At Christmas, or whatever holiday you celebrate at this time of the year, you need to remember to focus on the joy and wonderful things that will occur, not expect perfection. Keep it simple and remember the love you and your special person have for each other.
More on this holiday topic soon
May god keep you in the palm of Her hand.
Holidays can be stressful when your loved one has Alzheimer's or another dementia and I will discuss some of the things you can do help with this stress. Today, however, I want to just begin with asking all of us to get into the right frame of mind. At Christmas, or whatever holiday you celebrate at this time of the year, you need to remember to focus on the joy and wonderful things that will occur, not expect perfection. Keep it simple and remember the love you and your special person have for each other.
More on this holiday topic soon
May god keep you in the palm of Her hand.
Sunday, November 7, 2010
Mobility in Dementia-More Issues
Recently, when I was assisting Mom in her daily walking, she said "this feels good". I was on cloud nine, so to speak!! This came to a screeching halt, moments later when she said "this hurts, God in heaven, can you help me?" Of course, I do not wish to have Mom suffer, but I do know the research and how important it is to keep people with dementia moving. It is very much a "move it or loose it" scenario. What is the compromise? Almost 2 years ago we were told Mom was not safe to walk by a physical therapist. My response was to take responsibility for her daily walk. She now walks 50-60 feet not 150 feet that she was walking 2 years ago, but she IS still walking and she has never fallen. Mom also participates in the morning exercises if she is not dozing in the chair!! So Mom, in spite of her progressed dementia, is fairly active.
We have talked previously about the research and the positive effects that walking and other excising presents for the elderly in general, and also for our loved ones with Alzheimer's disease and other dementia's. Whether it is the issue of keeping muscles and tendons from contracting and becoming immobile, or keeping good skin integrity through better circulation, or producing more positive hormones in the body such a serotonin and endorphins in small amounts, among other positive effects, keeping the body active is extremely helpful. There of course, must be a balance between safety and mobility, but it must be remembered that keeping active in itself prevents falls and thus increases safety. Life and dementia are both ultimately about finding this balance.
May God keep her in the palm of Her hand.
We have talked previously about the research and the positive effects that walking and other excising presents for the elderly in general, and also for our loved ones with Alzheimer's disease and other dementia's. Whether it is the issue of keeping muscles and tendons from contracting and becoming immobile, or keeping good skin integrity through better circulation, or producing more positive hormones in the body such a serotonin and endorphins in small amounts, among other positive effects, keeping the body active is extremely helpful. There of course, must be a balance between safety and mobility, but it must be remembered that keeping active in itself prevents falls and thus increases safety. Life and dementia are both ultimately about finding this balance.
May God keep her in the palm of Her hand.
Sunday, October 31, 2010
Another Dietary Issue
When strawberries are in season I often bring Mom strawberry short cake. Food has always had a love-hate component in her life, as keeping weight off has always been an even bigger issue. She did, however, love to cook and loved to present her family with delicious, great looking food. Thus food was important on numerous levels. When I brought the strawberry short cake into her a few days ago, she said "thank heaven for some real food". What I found out was several days earlier, the facility had started to puree her meat and grind the rest of her food. I immediately got this order reversed.
When a person with dementia takes a long time to eat, a long to chew or generally is having eating problems the answer is often to go straight to a pureed diet. For swallowing problems or true chewing problems, grinding the meat or mashing the vegetables may well be the answer. Pureed food should be the very last resort for severe swallowing or choking problems. By pureeing food it takes away the texture from the food, removes any visual appeal and creates a generally unsatisfying mush.
Thickening liquids can also create more swallowing and hydration problems than it solves. Newer research shows thickening beyond a nectar or tomato juice consistency actually creates more choking than it prevents. Often when thickening is used, the person with dementia drinks less and this can cause problems with medications, digestion and increase the occurrence of bladder infections. As family members we can ask the health care providers for the reasons for certain interventions. Often common sense approaches are the best!!
May Good keep you in the palm of Her hand.
When a person with dementia takes a long time to eat, a long to chew or generally is having eating problems the answer is often to go straight to a pureed diet. For swallowing problems or true chewing problems, grinding the meat or mashing the vegetables may well be the answer. Pureed food should be the very last resort for severe swallowing or choking problems. By pureeing food it takes away the texture from the food, removes any visual appeal and creates a generally unsatisfying mush.
Thickening liquids can also create more swallowing and hydration problems than it solves. Newer research shows thickening beyond a nectar or tomato juice consistency actually creates more choking than it prevents. Often when thickening is used, the person with dementia drinks less and this can cause problems with medications, digestion and increase the occurrence of bladder infections. As family members we can ask the health care providers for the reasons for certain interventions. Often common sense approaches are the best!!
May Good keep you in the palm of Her hand.
Sunday, October 24, 2010
The Power of Yes- the Destruction of No-Communication in Dementia
When I was with Mom one day last week she said to me I want to go "home". Now this is one of the first time she has said this in several years, infact it seemsed she thought of her facility as "home". It would have been easy to have said "no Mom, you live here." Instead, I said I love you Mom and kissed her on the hand. This small distraction caused her to smile and say "Kiss me on the cheek, please, not the hand, which I promptly did.
It is important to keep in mind there is a great deal of research on the use of "no". It is the single most negatively charged word in the English language. If I had used the first response, "no Mom, you live here", it would have created a negative response, both physically and emotionally. Mom may have gotten upset, become teary eyed or demanded, again to go home. Often times trying to get the person with Alzheimer's or other dementias into our "reality" or our world is not only futile, but upsetting to the loved one. Instead, mom had something else to focus on, the kiss, location of the kiss. This approach brought a smile and some sense she had control-my cheek not my hand" After the kisses on the check, she promptly said I love you. A very differant outcome than it could have been. Thinking of this and using this approach can make your life easier, your loved one happier and the world a more ordered pleasant place. In the world of Dementia this is a gift from the Angels!!
May God keep you in the Palm of Her hand!!
Monday, September 6, 2010
To Walk or Not to Walk-Mobility Issues in Dementia
As Mom has progressed in her disease, it has become increasingly difficult for her to ambulate. Walking became difficult probably 4 years ago. She has used a walker for all this time. About a year ago her PT evaluation said she was not safe to walk anymore. I rejected this as I see in the literature how important it is to keep as active as possible. Using our bodies through walking is as important as using our minds, in preventing the progression of Alzheimer's Disease. I then worked out a deal with her Geriatrician, to allow me to walk her. Since I am with her everyday, she then gets to walk every daily. In the the last 4-5 months it is increasingly difficult for her to walk the 150 feet we were doing and it now has become 75-80 feet. When I got back from vacation a week or so ago, she was very weak, because she had not walked for a week. The first few days back, it was a monumental struggle to walk starting with 25 feet and increasing a bit each day. The 2nd or 3rd day back we were struggling with the walking and she was continually saying she wanted to sit down. As I conjouled, kidded and pleaded with her to keep going I remembered her efforts with my dad after his major stroke when he was 52. She was fanatical about his rehabilitation and when they said he would never walk again she kept up the exercises and he did walk! I said to her "remember how hard you pushed dad and how great he recovered? Mom, I am just trying to help you like you helped dad." She looked at me and said "don't bring that up, that was a hard time, but I will walk a little farther."
Keeping our loved ones active is not easy, for you or for them, but the research is clear that it helps their quality of life, their health, their stiffness, and their clarity at the highest possible level. It prevents in a small way, the progression of the disease. Wheel chairs are often the fall back, but they are often a crutch which, once started, becomes increasingly used. If a wheel chair is used, it should be a transportation vehicle not a place to live. If your loved one comes to the table, they then should be transferred to a dining room chair. Again, a wheel chair is not a place to live. We can play a role in keeping our loved ones active. It is easier for all of us to just let the decline in mobility to happen, but for all us, it is better to keep struggling and keep active!!
May God keep you in the palm of Her hand.
Keeping our loved ones active is not easy, for you or for them, but the research is clear that it helps their quality of life, their health, their stiffness, and their clarity at the highest possible level. It prevents in a small way, the progression of the disease. Wheel chairs are often the fall back, but they are often a crutch which, once started, becomes increasingly used. If a wheel chair is used, it should be a transportation vehicle not a place to live. If your loved one comes to the table, they then should be transferred to a dining room chair. Again, a wheel chair is not a place to live. We can play a role in keeping our loved ones active. It is easier for all of us to just let the decline in mobility to happen, but for all us, it is better to keep struggling and keep active!!
May God keep you in the palm of Her hand.
Saturday, August 28, 2010
Weight Loss and Alzheimer's
As Mom has gone through the disease process, she has had problems with weight loss on and off. She is now in the most difficult stretch of weight loss she has experienced thus far. We are clinging to the 90# bench march. We have been very aggressive with adding calories. This comes in the form of lots of butter, adding peanut butter to lots of items and lots of snacks. Mom has two complicators including lactose intolerance and diabetes. Ice cream, high calorie desserts, and many other of the typical answers, are out of the question. Mom, of course grew up in an era which thought butter was a healthy food!! Butter has been one of our largest tools. One day when I came, I asked how her lunch was doing. She unprompted, said, "I would love more butter, so tell her to 'pinch' some." I laughed at this reference because 'pinch' was a term we used to use when I was a kid, but I have not heard this in a while. It was also a great day as she had initiated a suggestion regarding her own care!
Adding calories is simple, but not easy. finding something your loved one likes, in a quanity which they will consume in large enough helpings to make a difference, while avoiding the allergies, intolerances, and disease process is complicated. The difficult part is maintaining this approach, everyday, several times a day. If we can navigate through all of these obstacles, we can maintain their need for a huge number of calories. Maintaining your loved ones need for calories and thus their weight ultimately will increase their quality of care and quality of life!!
May God keep you in the palm of Her hand.
Adding calories is simple, but not easy. finding something your loved one likes, in a quanity which they will consume in large enough helpings to make a difference, while avoiding the allergies, intolerances, and disease process is complicated. The difficult part is maintaining this approach, everyday, several times a day. If we can navigate through all of these obstacles, we can maintain their need for a huge number of calories. Maintaining your loved ones need for calories and thus their weight ultimately will increase their quality of care and quality of life!!
May God keep you in the palm of Her hand.
Saturday, July 31, 2010
What do Changes Mean? You may be Right!!
As Mom progresses, I try to tell myself "you must expect deterioration, Delores, it is part of the disease". Several days ago as Mom was struggling with her walking and I was thinking about how she was going down hill, it dawned on me that her last decline had occurred very quickly. This triggered the question, "is this the Alzheimer's Disease or is she ill. When a decline is quite sudden or is much faster then previous rates of decline, and there is no explanation, the illness question should be asked. Mom turned out to have a urinary tract infection (UTI) and we are now treating this.
Whether it is a UTI, pain, pneumonia or other illness, these can cause an increase in behaviors and/or decline in cognitive function or mobility. There is no doubt, as familoy members, we all want to be realistic and accept the inevitibility of the downward path of the diease. The other side of the coin, however, is that this fact makes it diffucult to keep in mind that our loved one also may have an acute illness and this acute illness may be causing the decline.
As I said, she is being treated for the UTI and this morning she said "I love you" which had been the only conversation she could inititiate for the last week or so. I said in response "I love you too Mom" and kissed her hand. She looked at me and said "no at least on the cheek." I didn't understand at first, then it dawned on me she meant "the kiss"!! That gave me goosebumps and a few tears. Mom was back in a small way. Very few can understand how meaningful that small phrase was. Those of you who have loved ones out there with the diease can appreciate this fully. This was a small moment and I cherish it dearly. I don't know how many more there will be, but this one means a great deal!!
May God keep you in the palm of Her Hand.
Whether it is a UTI, pain, pneumonia or other illness, these can cause an increase in behaviors and/or decline in cognitive function or mobility. There is no doubt, as familoy members, we all want to be realistic and accept the inevitibility of the downward path of the diease. The other side of the coin, however, is that this fact makes it diffucult to keep in mind that our loved one also may have an acute illness and this acute illness may be causing the decline.
As I said, she is being treated for the UTI and this morning she said "I love you" which had been the only conversation she could inititiate for the last week or so. I said in response "I love you too Mom" and kissed her hand. She looked at me and said "no at least on the cheek." I didn't understand at first, then it dawned on me she meant "the kiss"!! That gave me goosebumps and a few tears. Mom was back in a small way. Very few can understand how meaningful that small phrase was. Those of you who have loved ones out there with the diease can appreciate this fully. This was a small moment and I cherish it dearly. I don't know how many more there will be, but this one means a great deal!!
May God keep you in the palm of Her Hand.
Sunday, July 11, 2010
When Times are tough-When Isn't It With The Disease
I have been gone for a few days to Orlando to watch several of my grand kids dance in a National competition. I am always apprehensive when I return as to the reaction Mom will have. Even though I had my niece, my husband and my son visiting her, I was not sure what her response would be. When I arrived at her facility and said "hello, I missed you, Mom" she looked up at me and said "Sassy, you are" with a big smile! I am not sure what that meant, but she said it with a smile and she then said "I wish I could kiss you". How bad can that be and frankly it made me feel a little guilty.
It did bring to mind, however, how difficult living with Alzheimer's Disease and other dementias must be. That thought was like cold water on my face. So often the word's don't come, there is loss of the ability to move around, when and where they would like, and loss of the ability to find their treasures or even remembering what their treasures are. It makes my brief visits seem so small, so feeble. One hour a day seems, by comparison, small as compared to the other 23 hours in the day. Just as I was contemplating this and feeling even more guilty, Mom said "get those ladies to help me." It then dawned on me that she had trust and faith in the team members who care for her and her life was made better by their kindness and love. Even though I am the daughter, they are friends and many, if not all, treat her like a friend and that really was comforting. This thought helped me to lessen the gulit and and even feel relieved and happy, that when I am gone, I know she is in the hands of people who care. I hope you all can find a "friend for you loved one. What a blessing!!
May God keep you in the palm of Her hand.
It did bring to mind, however, how difficult living with Alzheimer's Disease and other dementias must be. That thought was like cold water on my face. So often the word's don't come, there is loss of the ability to move around, when and where they would like, and loss of the ability to find their treasures or even remembering what their treasures are. It makes my brief visits seem so small, so feeble. One hour a day seems, by comparison, small as compared to the other 23 hours in the day. Just as I was contemplating this and feeling even more guilty, Mom said "get those ladies to help me." It then dawned on me that she had trust and faith in the team members who care for her and her life was made better by their kindness and love. Even though I am the daughter, they are friends and many, if not all, treat her like a friend and that really was comforting. This thought helped me to lessen the gulit and and even feel relieved and happy, that when I am gone, I know she is in the hands of people who care. I hope you all can find a "friend for you loved one. What a blessing!!
May God keep you in the palm of Her hand.
Sunday, June 27, 2010
Meds and More-Making Sure They Are Just Right
Mom's calling out had increased over the last 7-8 months, so about 3 months ago we had increased her psychotropic med to help with her "disordered" thinking. After about 6 weeks it became apparent, however, that it was making her more drowsy during the day, so we cut back. Also as a part of her med review, I talked to her geriatrician about putting her on a second Alzheimer's drug-Namenda. Although, I have felt the combination of one of the anticholinergic meds-Exelon/Aricept/Razedyne and Namenda is the optimal treatment, I had been reluctant to go against mom's geriatrician, as he is not a "fan" of Namenda. Namenda was started 3 weeks ago and she has improved significantly. Today we were discussing how we talk a great deal and she loves to have me discuss my day or whatever. She said "we talk alot-we echo each other." Now this is the first time in awhile that she has initiated a "clever" remark which was so much her "hallmark", so much what she did.
Today's medications are powerful and quite helpful. There is no "magic bullet" or "magic map", however, to tell us what to order or what will work the best for specific behaviors not responding to other interventions. Although by matching behaviors with meds for that behavior (i.e. anti depression drugs for depression), we often can see results, but, sometimes they do not work. It then becomes trial and error or trail and success. The secret is to never give up, and believe there is an answer.
In particular, it is important to remember that all people should be on both types of Alzheimer's Medication. The research shows that the two types of medication have a synergistic effect on functionality and preventing behaviors. For optimum effect the person should be started on the meds the earlier the better. Although even with the two medications there will be a decline. It will be much slower than if your loved one is not on the medications and their quality of life will be higher. It will not prolong the length of their life, only the quality of their life. These medications do not stop the ravages of the disease, but helps the tissue which remains to function at it's highest possible state. It is worth the expense, in my opinion, and the trouble for both you and your loved one.
May God Keep you in the Palm of Her Hand.
Today's medications are powerful and quite helpful. There is no "magic bullet" or "magic map", however, to tell us what to order or what will work the best for specific behaviors not responding to other interventions. Although by matching behaviors with meds for that behavior (i.e. anti depression drugs for depression), we often can see results, but, sometimes they do not work. It then becomes trial and error or trail and success. The secret is to never give up, and believe there is an answer.
In particular, it is important to remember that all people should be on both types of Alzheimer's Medication. The research shows that the two types of medication have a synergistic effect on functionality and preventing behaviors. For optimum effect the person should be started on the meds the earlier the better. Although even with the two medications there will be a decline. It will be much slower than if your loved one is not on the medications and their quality of life will be higher. It will not prolong the length of their life, only the quality of their life. These medications do not stop the ravages of the disease, but helps the tissue which remains to function at it's highest possible state. It is worth the expense, in my opinion, and the trouble for both you and your loved one.
May God Keep you in the Palm of Her Hand.
Saturday, June 12, 2010
Faith and Dementia-some things Don't change
The other day I belatedly read the last Blog posting to Mom. Those of you who have read several postings know I always end with "May God keep you in the Palm of Her hand". When I read that line I looked at Mom and she was staring off into the distance. I was not sure what her expression was indicating. She tends to have fewer and fewer expressions as her disease marches on. Therefore I said to her "I really think God may be a woman. What do you think?" She turned her head and said with a slight smile "I don't think it really matters"
Now it is important to know Mom is a very devote Catholic. For many years after she retired, she went to Mass every day. We always had priests and nuns at our house for dinner on holidays, Holy days and other various times. I think Mom had high hopes that one of the kids would join the clergy. Religion was important in our household. Mom, however, was raised a Methodist and converted to Catholicism when she married my father. I have an uncle who was a Methodist minister. This background always gave Mom just a bit of ecumenical flavor even though she tried to show a very "straight and narrow" Catholic face to us kids.
As the disease progresses it often takes away many of the inhibitions the person experienced in the past. I believe, probably, this would have been Mom's belief many years ago. In other words, what difference does it make, if god has a gender, which gender it is. Mom, however, tried to show quite the traditional views and would never have expressed this opinion earlier in her life. It actually was quite nice to know that with all the loses Mom has experienced, in this one area, she could speak her mind and not have any trepidations about it. Just one more silver lining, small as it might be. I do believe we all can see the lose of inhibitions as having a positive side to it. We can choose to look at this with a smile and a nod to the freedom it gives our loved ones. It is either that or morn one more lose in a long line of loses. The first is a lot more fun and can bring some joy to a tough disease.
May God keep you in the palm of Her hand!!
Now it is important to know Mom is a very devote Catholic. For many years after she retired, she went to Mass every day. We always had priests and nuns at our house for dinner on holidays, Holy days and other various times. I think Mom had high hopes that one of the kids would join the clergy. Religion was important in our household. Mom, however, was raised a Methodist and converted to Catholicism when she married my father. I have an uncle who was a Methodist minister. This background always gave Mom just a bit of ecumenical flavor even though she tried to show a very "straight and narrow" Catholic face to us kids.
As the disease progresses it often takes away many of the inhibitions the person experienced in the past. I believe, probably, this would have been Mom's belief many years ago. In other words, what difference does it make, if god has a gender, which gender it is. Mom, however, tried to show quite the traditional views and would never have expressed this opinion earlier in her life. It actually was quite nice to know that with all the loses Mom has experienced, in this one area, she could speak her mind and not have any trepidations about it. Just one more silver lining, small as it might be. I do believe we all can see the lose of inhibitions as having a positive side to it. We can choose to look at this with a smile and a nod to the freedom it gives our loved ones. It is either that or morn one more lose in a long line of loses. The first is a lot more fun and can bring some joy to a tough disease.
May God keep you in the palm of Her hand!!
Monday, May 31, 2010
Memory:Why is it so Complicated and so Sporatic?
I have been bringing Mom strawberries for the last several weeks. Mom has always loved strawberries and down through the years, I remember growing, picking and canning them. I learned to love strawberries also! As I mentioned, I have been bringing her strawberries for a couple of weeks and we have been enjoying them together. We have been talking about all of the things we did around strawberries and have had many laughs about those times. Today when I brought the strawberries she said "I was wondering when you would bring some strawberries, I have bee hungry for them." Now this was surprising since I have been bringing them almost daily for several weeks. Mom is becoming more and more unable to save her more recent memories.
We know that the hipocampus, located in the center of the brain, is a big part of the "save as " function of the brain. As Alzheimer's Disease progresses and the hipocampus becomes more and more affected, the person becomes increasingly unable to save their memories. Now this is very deceiving as the hipocampas will hold the memory for 24-48 hours and sometimes longer. So something the person remembers from 2 days ago will be lost on the 3rd or 4th day. When someone remembers for several days, but then cannot remember that event later, it is confusing or even seems feels like the person with dementia "is not trying". It may even seem like the loved one is out to confuse or make "fun of us". The contrary is true, it is just becoming more and more diffucult for the person to remember.
My advise and the advise I live by, is to rejoice when Mom remembers and let it go when she does not. It is the disease and its devistation at work. Mom and I have had fun with the strawberries, but she is not remembering this today. That's okay because the smiles and the laughs were helpful for her even if she does not remember them. A tough, complicated concept, but an important principle for all of us to internalize so we can move on as the disease progresses.
God bless you and may she keep you in the pam of Her hand.
We know that the hipocampus, located in the center of the brain, is a big part of the "save as " function of the brain. As Alzheimer's Disease progresses and the hipocampus becomes more and more affected, the person becomes increasingly unable to save their memories. Now this is very deceiving as the hipocampas will hold the memory for 24-48 hours and sometimes longer. So something the person remembers from 2 days ago will be lost on the 3rd or 4th day. When someone remembers for several days, but then cannot remember that event later, it is confusing or even seems feels like the person with dementia "is not trying". It may even seem like the loved one is out to confuse or make "fun of us". The contrary is true, it is just becoming more and more diffucult for the person to remember.
My advise and the advise I live by, is to rejoice when Mom remembers and let it go when she does not. It is the disease and its devistation at work. Mom and I have had fun with the strawberries, but she is not remembering this today. That's okay because the smiles and the laughs were helpful for her even if she does not remember them. A tough, complicated concept, but an important principle for all of us to internalize so we can move on as the disease progresses.
God bless you and may she keep you in the pam of Her hand.
Sunday, May 23, 2010
Flashes of Mom:Hope Springs Eternal
Yesterday morning, I went to visit Mom for breakfast. She has had her Alzheimer's med patch reduced slightly as she was feeling "ill" on and off and this could be a side effect of the med. She weighs 91# and it is recommended to reduce the med for people who are under 100#. I have been trying to systematically visit at different times of day to see if her level of awareness, functioning, behaviors were getting better, worse or staying the same. We both had finished breakfast and were going to do her walking for the day. I brushed off her slacks where some of her scrambled egg had fallen. She looked at me with twinkle and said, "so you are giving me the big brushoff"!! We both had a good laugh and my heart sang. It was a flash of the Mom I have know for almost 64 years!! Hope springs eternal, but hopefully does not delude me or trick me into a "false" sense of hope.
Since I do this dementia work day in and day out at Harbor House, I understand this "flash" is just that, a "flash". I also understand this is a very temporary improvement in Mom's functioning. I also believe I should just enjoy the humor and enjoy Mom for the day. One of the reasons this disease can be so devastating is that these flashes can trick us into thinking that this new level will be a permanent state. If we can only enjoy the moment, enjoy the humor, enjoy the flash, but not be tricked into thinking it is permanent, we will be all the better for it.
Again let's enjoy the humor, the humanity, the momentary return of our loved one. Because Alzheimer's Disease is progressive and will eventually take our loved one, it is good to celebrate the joy of the moment. This joy, no matter how brief or how fleeting, is there, if we want to grab on to it, even if it is only a quick flash. The best advise I give myself and I would give you the readers, is ENJOY, but do not try to hang on to it. Hold the joy in your heart and forget what you can of the terrible devastation of the disease. In the long haul, your mom, dad, husband or loved one is the same person and should remain in your heart, the person you have known all these years, not what the disease has turned them into. Love them, cherish them and enjoy what you can. Again this is not easy, but with a bit of grit and determination you can hold the true person in your heart.
May God hold you in the palm of Her hand.
Since I do this dementia work day in and day out at Harbor House, I understand this "flash" is just that, a "flash". I also understand this is a very temporary improvement in Mom's functioning. I also believe I should just enjoy the humor and enjoy Mom for the day. One of the reasons this disease can be so devastating is that these flashes can trick us into thinking that this new level will be a permanent state. If we can only enjoy the moment, enjoy the humor, enjoy the flash, but not be tricked into thinking it is permanent, we will be all the better for it.
Again let's enjoy the humor, the humanity, the momentary return of our loved one. Because Alzheimer's Disease is progressive and will eventually take our loved one, it is good to celebrate the joy of the moment. This joy, no matter how brief or how fleeting, is there, if we want to grab on to it, even if it is only a quick flash. The best advise I give myself and I would give you the readers, is ENJOY, but do not try to hang on to it. Hold the joy in your heart and forget what you can of the terrible devastation of the disease. In the long haul, your mom, dad, husband or loved one is the same person and should remain in your heart, the person you have known all these years, not what the disease has turned them into. Love them, cherish them and enjoy what you can. Again this is not easy, but with a bit of grit and determination you can hold the true person in your heart.
May God hold you in the palm of Her hand.
Wednesday, May 12, 2010
As the Disease Progresses
I just returned from a very short cruise to Nassau. For the last few years, when I have traveled, Mom has given me a hard time, a subtle but plain message that she missed me and I should not leave her again. 3 years ago my sister, my niece and I went to Ireland to meet some of our relatives and do a genealogy hunt. Upon landing in O'Hare I received a voice mail that Mom had gone to our home town with one of her friends and reserved a room at an an assisted living facility there (40 miles from the facility which our family owns and she was now living). We worked it out, but I have come to expect some grief when I get home after traveling!!
You can well imagine what I was expecting when I returned Monday. However, it was like I have never left. Even today she acted as though I had never been away. I should be thankful, but it is so very different. I can't say I miss it, but when you have lived with something for a number of years it feels almost like something is gone. A part of the loss however, is the fact that Mom is progressing and she not longer misses me. I, of course, knew this was coming. There have been many small things she is losing, her ability to carry on a conversation, her ability to feed herself. These, somehow were easier to accept. I don't have too much teaching to do tonight-only sharing. This is tough disease and sometimes those of us who share it with our loved ones are hit hard-kind like a punch in the gut. I have no humor tonight, no insight, just an understanding for those of you who are suffering.
May God Hold You in the Palm of Her Hand.
You can well imagine what I was expecting when I returned Monday. However, it was like I have never left. Even today she acted as though I had never been away. I should be thankful, but it is so very different. I can't say I miss it, but when you have lived with something for a number of years it feels almost like something is gone. A part of the loss however, is the fact that Mom is progressing and she not longer misses me. I, of course, knew this was coming. There have been many small things she is losing, her ability to carry on a conversation, her ability to feed herself. These, somehow were easier to accept. I don't have too much teaching to do tonight-only sharing. This is tough disease and sometimes those of us who share it with our loved ones are hit hard-kind like a punch in the gut. I have no humor tonight, no insight, just an understanding for those of you who are suffering.
May God Hold You in the Palm of Her Hand.
Sunday, April 18, 2010
NCAA Playoffs and other Alzheimer's Topics
This entry is a follow up on our discussion RE Mom and I filling out the NCAA bracket. Mom and I had fun doing it and we followed it every few days as the games progressed. It became quite the process and Mom was doing very well because as many of you know, she picked many of the "Catholic" sounding schools. Several of them were quite the upsets. By the time all was said and done Mom won the entire process!!
Last Saturday, there was a quarterly party at Mom"s assisted living facility. One of my sons, his wife, and 2 of my grandson's were there and we discussed Mom winning the contest. Everyone congratulated her and we moved on to other subjects. After they left, Mom asked if she really had won the contest. Yes, I assured her, she had. She then commented on how disappointed she thought Logan (the grandson who had set it up) looked. "I think you should tell him he won. That's okay with me." Now Mom could not process the fact that Logan is almost 14 not 3 and just telling him he had won, would not work. He would "know".
Now I had a decision. I could tell Mom that Logan would know the difference or I could take her generous offer and tell her that this would be very nice and he would like that. One was the absolute truth and the other was was "entering into her world" and using what we often often call Creative Reality. I decided to "enter into her world" and tell her that this was such a nice offer, that I would do just that. She beamed when I told her, and it was apparent, that this approach very much nurtured her desire to make the world a good place for her family. That had always been her a key part of her philosophy of life.
My advise to anyone reading this account ,who has a loved one with the diease,would be to "enter into your loved ones world" whenever it is needed. The "truth" sometimes needs to be flexible as the disease progresses. Your loved one's happiness and quality of life can sometimes hinge on doing this. Try it and you will find it may assist you, when you are in a "corner". It will help you and please your loved one-real win-win!!
May God keep you in the palm of Her hand!!
Last Saturday, there was a quarterly party at Mom"s assisted living facility. One of my sons, his wife, and 2 of my grandson's were there and we discussed Mom winning the contest. Everyone congratulated her and we moved on to other subjects. After they left, Mom asked if she really had won the contest. Yes, I assured her, she had. She then commented on how disappointed she thought Logan (the grandson who had set it up) looked. "I think you should tell him he won. That's okay with me." Now Mom could not process the fact that Logan is almost 14 not 3 and just telling him he had won, would not work. He would "know".
Now I had a decision. I could tell Mom that Logan would know the difference or I could take her generous offer and tell her that this would be very nice and he would like that. One was the absolute truth and the other was was "entering into her world" and using what we often often call Creative Reality. I decided to "enter into her world" and tell her that this was such a nice offer, that I would do just that. She beamed when I told her, and it was apparent, that this approach very much nurtured her desire to make the world a good place for her family. That had always been her a key part of her philosophy of life.
My advise to anyone reading this account ,who has a loved one with the diease,would be to "enter into your loved ones world" whenever it is needed. The "truth" sometimes needs to be flexible as the disease progresses. Your loved one's happiness and quality of life can sometimes hinge on doing this. Try it and you will find it may assist you, when you are in a "corner". It will help you and please your loved one-real win-win!!
May God keep you in the palm of Her hand!!
Thursday, April 1, 2010
Communication-Be Prepared Not To Be Perfectly Prepared
I was gone for a few days to Tulsa, Oklahoma. I went to a dance convention with two of my grand kids. My oldest grandson is an assistant in one of the dance companies and my granddaughter was a scholarship finalists. I always wait to tell Mom, when I am going till the day before I leave. She then does not have to morn my going ahead of time. I always dread coming home,however, as I am not sure if she will be upset that I was gone. When I come home, I always bring her a bell to add to her collection. When I arrived, she said "my daughter, Delores, will like it that you brought this bell for me, she always brings one too". What is the right answer to this comment? I simply said "I thought you would like it, Mom". I tried not to "correct her" and just move on. That's what we did and it was fine. We talked about what Bryce and Caitlyn did at the convention and where we ate and lots of other fun things. She really enjoyed hearing about the great grand kids. She seemed to reorient herself without my doing it and embarrassing her.
My point is, I do this for a living. I teach communication with people that have Dementia 3-4 times a week. Even with this, level of experience, I am not always sure what to say. Having said this, I will just reinforce it is important to know what to do in a general way. Knowledge is helpful, but you will never know what to say in all circumstances. From there, do the best you can "getting into their world". The person with Alzheimer's Disease or other Dementia's can't get in to our world so we often have to get into theirs. Its not easy, but it is rewarding!! God Bless all of you who care for people with dementia, as you teach me as much as I teach you! Thanks.
May God hold you in the palm of Her hand!!
My point is, I do this for a living. I teach communication with people that have Dementia 3-4 times a week. Even with this, level of experience, I am not always sure what to say. Having said this, I will just reinforce it is important to know what to do in a general way. Knowledge is helpful, but you will never know what to say in all circumstances. From there, do the best you can "getting into their world". The person with Alzheimer's Disease or other Dementia's can't get in to our world so we often have to get into theirs. Its not easy, but it is rewarding!! God Bless all of you who care for people with dementia, as you teach me as much as I teach you! Thanks.
May God hold you in the palm of Her hand!!
Thursday, March 18, 2010
March Basketball Madness-An Azheimer's Family Event
We have always been a "sports" family, whether it was the Packers, the Badgers or the Braves, (yes the Braves used to be in Wisconsin!) and we rooted them on because they were "our" teams. Mom always loved watching and cheering for them and taught me to do the same. The last few years, my grandson Logan has put together a bracket competition for the NCAA tournament. This year was no exception. Yesterday I took over the bracket when I went to see Mom and we went through the match ups. Last year she would ask me who was favored to win. Her Dementia has progressed, however, beyond being able to do this, so this year, I volunteered in each pair, who was the favored of the two. Now I expected her to just choose the favorites, but she surprised me. Any team which had a "catholic name" she chose, thus she chose St. Mary's, an upset today, and Notre Dame, who got upset today. She seemed to enjoy choosing. She also enjoyed it when I called Logan to get the bracket input information and had to get further input advise from my son. She really loved it when I mentioned this had become a 4 generation project. We had a blast and will continue to discus how well (or poorly) we have done for the next 3 weeks.
Adapting and simplifying tasks and projects will help you to share your life with your loved one and replicate the life your loved one would have had if they had not gotten the disease. We want to do this at a level which is manageable for them. Time spent with them can be more fun, and probably more stimulating for them. How can we make the experience "failure free"? How can we include others in the family? How can we do it in a way which they can handle, but still participate? All questions we can ask our selves, and when answered, can make a fun, interesting experience for all without a huge amount of effort.
Mom and I want to thank my son, Jonathan and my grandson, Logan for making this experience possible and fun. It's another step in the Alzheimer's journey made positive. Thanks to both of you!!
May God hold you in the palm of Her hand.
Adapting and simplifying tasks and projects will help you to share your life with your loved one and replicate the life your loved one would have had if they had not gotten the disease. We want to do this at a level which is manageable for them. Time spent with them can be more fun, and probably more stimulating for them. How can we make the experience "failure free"? How can we include others in the family? How can we do it in a way which they can handle, but still participate? All questions we can ask our selves, and when answered, can make a fun, interesting experience for all without a huge amount of effort.
Mom and I want to thank my son, Jonathan and my grandson, Logan for making this experience possible and fun. It's another step in the Alzheimer's journey made positive. Thanks to both of you!!
May God hold you in the palm of Her hand.
Friday, March 12, 2010
"I Love You" and other Alzheimer's Positives
When I contemplated doing a Blog and feature my Mom, about a year ago, I discussed the idea with her, at the level I thought she could understand. When she said that it was a good idea, I asked her what I should write about. She looked me right in the eye and said "tell them we love each other." I need to remind everyone reading this Blog that I grew up hearing "I love you" very sparingly' not because my parents did not love us, but in the 50's this was said out loud much less than we now say it; just a sign of the times. It was very "cool" to hear Mom choose that topic.
That was a year ago, and Mom has progressed in her disease, but it gets even better. Now if things aren't going well, I can put on a big smile and and look at her squarely and in a few seconds she will say, "I love you". I never thought I would have a instant way to get my "love fix." Now I will say, Mom says "I love you" to others, not infrequently.
I could get bummed out about this, but, I have chosen to look at it as "Mom has a lot of love to go around, and after all I know she really does love me." The other question is why does she do this. Of course, we cannot know exactly why someone with Alzheimer's disease, does what it is they do. We cannot ever know why anyone does what they do, but there are a few clues. Mom always loved being the "healer", loved being the person that others "feel good." I believe this is her attempt to make me feel good, feel loved. Even though Mom is quite debilitated her basic personality is showing through in this gesture. This is often true in the behaviors of people with Alzheimer's. Their basic personality shows through if we are patient enough and creative enough to figure it out. I would encourage everyone to find the patience and creativity to do this, it is very rewarding.
Thanks, good night and may God hold you in the palm of Her hand.
That was a year ago, and Mom has progressed in her disease, but it gets even better. Now if things aren't going well, I can put on a big smile and and look at her squarely and in a few seconds she will say, "I love you". I never thought I would have a instant way to get my "love fix." Now I will say, Mom says "I love you" to others, not infrequently.
I could get bummed out about this, but, I have chosen to look at it as "Mom has a lot of love to go around, and after all I know she really does love me." The other question is why does she do this. Of course, we cannot know exactly why someone with Alzheimer's disease, does what it is they do. We cannot ever know why anyone does what they do, but there are a few clues. Mom always loved being the "healer", loved being the person that others "feel good." I believe this is her attempt to make me feel good, feel loved. Even though Mom is quite debilitated her basic personality is showing through in this gesture. This is often true in the behaviors of people with Alzheimer's. Their basic personality shows through if we are patient enough and creative enough to figure it out. I would encourage everyone to find the patience and creativity to do this, it is very rewarding.
Thanks, good night and may God hold you in the palm of Her hand.
Monday, March 1, 2010
Music-Noise and other Counter Intuitive Dementia Facts
Mom and Dad always loved music. In my early years it was the Country and Western. Now I am here to tell you it was the old time, very twangy Country and Western music, not the modern "cross over" that you now hear. The "tumbling, tumble weed" Hank Williams type music. Later they became "more enlightened" And played modern music like the Beetles!! Whether in the car, at home, or watching TV, we had music. Mom can sing the oldies with the best of them!!
Doesn't it make sense that the use of music would be therapeutic at meal times, during activities and during cares? It just makes COMMOM sense, doesn't it? Well the disease rarely makes common sense and this is true for music.
When you have Dementia, you can focus on only one detail at a time. No multi tasking here. If you are playing Bingo, and have Dementia, you need to concentrate on Bingo. The same is true of eating, you need to concentrate on eating. If you have Dementia, music in the background is simply noise, or worse yet, it is a distracting factor. Again, you can concentrate only on one thing at a time. Now if I am resting and have Dementia, the music is great, because I don't have to concentrate on anything else. Our loved ones have this request, "present me with one thing at a time and I can do pretty well!!" This a simple concept, but not an easy one to remember because it is so counter intuitive. It is important, however, for their highest quality of life and prevention of behaviors caused by the "overload" or over stimulation of trying to concentrate on two things at a time. Music at the right time is great, but knowing when it is the right time is, is most important!!
Thanks. May God keep you in the palm of her hand.
Doesn't it make sense that the use of music would be therapeutic at meal times, during activities and during cares? It just makes COMMOM sense, doesn't it? Well the disease rarely makes common sense and this is true for music.
When you have Dementia, you can focus on only one detail at a time. No multi tasking here. If you are playing Bingo, and have Dementia, you need to concentrate on Bingo. The same is true of eating, you need to concentrate on eating. If you have Dementia, music in the background is simply noise, or worse yet, it is a distracting factor. Again, you can concentrate only on one thing at a time. Now if I am resting and have Dementia, the music is great, because I don't have to concentrate on anything else. Our loved ones have this request, "present me with one thing at a time and I can do pretty well!!" This a simple concept, but not an easy one to remember because it is so counter intuitive. It is important, however, for their highest quality of life and prevention of behaviors caused by the "overload" or over stimulation of trying to concentrate on two things at a time. Music at the right time is great, but knowing when it is the right time is, is most important!!
Thanks. May God keep you in the palm of her hand.
Sunday, February 14, 2010
They Just Say "No"
I had breakfast with Mom this AM. When I have breakfast with Mom, I always get her coffee after we are finished. Today I asked her if she would like some coffee, and she said "No". I then, realized I needed to take my own advise-never ask a Yes /No question as people with Dementia/Alzheimer's Disease will almost always say No. I then got her coffee with milk and sweetener-The Irish way-she immediately started drinking it and said this is "great coffee."
Although this seems counter intuitive, it was quite predictable. I always tell our team members, "our residents with Dementia say no for a living" and the research supports this supposition. If the person says No, nothing is expected and this comfortable. If the person says Yes, they know at some level, that they may be required to do something and this is not comfortable. After lots of "No, don't do that", "stop, you are going the wrong way" and other failures, No is the most comfortable response.
It is important that those of us who care for and love someone with Dementia/Alzheimer's disease, that we need to approach the choice factor differently. If ,for instance, Mom had refused to drink the coffee, that would have been fine. This is Mom's level of ability to choose. Choice can be overwhelming to those with progressed disease, but by adapting and modifying choice, to the level the person can successfully tolerate, everyone can enjoy the interaction more and person with the diease will have the ability to chose and feel successful.
May God Keep you in the palm of Her hand!!
I had breakfast with Mom this AM. When I have breakfast with Mom, I always get her coffee after we are finished. Today I asked her if she would like some coffee, and she said "No". I then, realized I needed to take my own advise-never ask a Yes /No question as people with Dementia/Alzheimer's Disease will almost always say No. I then got her coffee with milk and sweetener-The Irish way-she immediately started drinking it and said this is "great coffee."
Although this seems counter intuitive, it was quite predictable. I always tell our team members, "our residents with Dementia say no for a living" and the research supports this supposition. If the person says No, nothing is expected and this comfortable. If the person says Yes, they know at some level, that they may be required to do something and this is not comfortable. After lots of "No, don't do that", "stop, you are going the wrong way" and other failures, No is the most comfortable response.
It is important that those of us who care for and love someone with Dementia/Alzheimer's disease, that we need to approach the choice factor differently. If ,for instance, Mom had refused to drink the coffee, that would have been fine. This is Mom's level of ability to choose. Choice can be overwhelming to those with progressed disease, but by adapting and modifying choice, to the level the person can successfully tolerate, everyone can enjoy the interaction more and person with the diease will have the ability to chose and feel successful.
May God Keep you in the palm of Her hand!!
Wednesday, January 27, 2010
The Roller Coster Continues
Mom is continuing to progress in her disease. She is less and less able to carry on a conversation or initiate a conversation. We are in her 7th year of actually knowing or having confirmed that that she has Dementia of the Probable Alzheimer's type. She probably had it for 3-4 years before this. So the fact that she has progressed is not a surprise. Mom will now answer questions almost exclusively most often with yes or no. A few days ago I was talking to her about my day, doing what we call "Storytelling". I then talked about what we would be doing tomorrow which was to polish her nails with the new "winter" color from the "Christmas red" which she had currently on her nails. When I finished, I said to her "does that sound like a plan?" She said "it sounds like something" with real emphasis in her voice and a big smile. Not a huge bit of conversation, but more than she has been able to do for several months. It made my heart sing. It was a small glimpse of "mom", a shadow of who she used to be!!
Now as we all know, joy is as stressful as a negative event. This comment by Mom caused a whole flood of emotions, love, tenderness, guilt-had I done enough?- could I do more next time and get the same or better results next time? I work everyday in the Dementia field and teach and counsel with families all the time, I still have the roller coaster ride as a daughter, when something like this occurs. I really want to say to all family and friends with people who have Alzheimer's Disease reading this, that when your roller coaster comes, don't fight it, but find a way to get out of it as quickly as possible. There may not be a way to totally prevent them. Knowledge, preparation, talking to others all help to flatten the lows and will help you to enjoy the highs. A few months ago I talked about the Dementia roller coaster, and I guess I now have begun to appreciate that the roller coaster continues, but I would not have it any other way.
May God keep You in the Palm of Her hand.
Now as we all know, joy is as stressful as a negative event. This comment by Mom caused a whole flood of emotions, love, tenderness, guilt-had I done enough?- could I do more next time and get the same or better results next time? I work everyday in the Dementia field and teach and counsel with families all the time, I still have the roller coaster ride as a daughter, when something like this occurs. I really want to say to all family and friends with people who have Alzheimer's Disease reading this, that when your roller coaster comes, don't fight it, but find a way to get out of it as quickly as possible. There may not be a way to totally prevent them. Knowledge, preparation, talking to others all help to flatten the lows and will help you to enjoy the highs. A few months ago I talked about the Dementia roller coaster, and I guess I now have begun to appreciate that the roller coaster continues, but I would not have it any other way.
May God keep You in the Palm of Her hand.
Monday, January 11, 2010
Alzheimer's Disease and Eating Diffuculties
Mom, until recently was able to inject quite a bit of humor in her conversation. A few months ago she looked across the table at the woman who sits across from her and said "she is so thin she looks like an xray". The irony of this comment comes from someone who weighs 92 pounds.
Eating difficulties and weigh loss are relatively common in Alzheimer's Disease. The damage in the brain affects the perception of food and hunger. In other words nothing smells or looks good. Hunger like pain may not be percieved for what it is. As the disease progresses the ability to remember what food is for is lost. Another eating problem which occurs in the disease is the inability to hold eating utensils, such a fork or spoon.
Chewing and swallowing problems also arise as muscle diffucuties in the throat and tongue arise. This slows the eating process and increases choking. It makes the meal process more problematic and less pleasureable. Eating becomes a chore for all involved, especially for the person.
Interventions which help with eating and prevent weight loss
1. Cue the person by eating with them to "rolemodel" the process
2. Make foods into finger foods so the person can help themselves as long as possible which perserves dignity and independence. This can be done by make most things into a "sandwich", including peas and mashed potatoes.
3. Remove distractions at meal time including music and TV. Even these are distractors to the brain which has diffuculty sorting out what is going on in the enviroment.
4. Take enough time for the eating process. Meals may take 30-40 minutes of eating time, but we must keep the food warm .
5. Add calories whenever possible. This can be in the form of butter on everything!! Lots of it! Also adding peanut butter on crackers or celery or high fat ice cream to Carnation Instant breakfast or Ensure.
6. Remember calories are king.
Meals are VERY important. Without this focus it leads to "failure to thrive" weight loss and a premature downward slide and loss of quality of life.
May God be with you and may She hold you in the palm of her hand.
Eating difficulties and weigh loss are relatively common in Alzheimer's Disease. The damage in the brain affects the perception of food and hunger. In other words nothing smells or looks good. Hunger like pain may not be percieved for what it is. As the disease progresses the ability to remember what food is for is lost. Another eating problem which occurs in the disease is the inability to hold eating utensils, such a fork or spoon.
Chewing and swallowing problems also arise as muscle diffucuties in the throat and tongue arise. This slows the eating process and increases choking. It makes the meal process more problematic and less pleasureable. Eating becomes a chore for all involved, especially for the person.
Interventions which help with eating and prevent weight loss
1. Cue the person by eating with them to "rolemodel" the process
2. Make foods into finger foods so the person can help themselves as long as possible which perserves dignity and independence. This can be done by make most things into a "sandwich", including peas and mashed potatoes.
3. Remove distractions at meal time including music and TV. Even these are distractors to the brain which has diffuculty sorting out what is going on in the enviroment.
4. Take enough time for the eating process. Meals may take 30-40 minutes of eating time, but we must keep the food warm .
5. Add calories whenever possible. This can be in the form of butter on everything!! Lots of it! Also adding peanut butter on crackers or celery or high fat ice cream to Carnation Instant breakfast or Ensure.
6. Remember calories are king.
Meals are VERY important. Without this focus it leads to "failure to thrive" weight loss and a premature downward slide and loss of quality of life.
May God be with you and may She hold you in the palm of her hand.
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