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.
Saturday, July 31, 2010
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.
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