Death and The Truth an Alzheimer's Dilema

My uncle recently died. He was 90. He and my aunt (my Mom's sister) lived in an assisted living across town. He "took care" of my aunt Marie in the assisted living every day. She has quite profound dementia and as it is so often the case, his health was seemingly fairly good for 90, but he passed first. As I went over to Mom's assisted living, I weighed telling Mom the truth or just leaving her in peaceful ignorance. I decided to give her the news. Upon telling her of uncle Merit's death she said "many of us are dying these days aren't we"? She did not seem upset just reflective.

It is often a dilemma as to delivering "bad news". Is it better to tell the person with Dementia and potentially up set them or not tell them and have them not fully understand what is going on in the world around them. There is no right or wrong answer as whether we should tell someone with dementia or not. The reality is people with dementia forget. If they become upset with the news of a death for instance, but the reality is they will probably forget. If it was upsetting, it is probably best not to repeat the information. You have informed the person, but there is no need to force them to relive the event over and over. If however they were not upset you may want to tell them more than once. Again there is no right or wrong answer. Listening to your heart will show you they way.

Holidays-A Tale of Love or Not

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.

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.

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.

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.

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!!

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.