Looks and awareness are still there, even when Alzheimer’s is chopping away at the brain. Opening Photo is our wedding…our 30th anniversary is this September by francy Dickinson
Dear Francy; It was mother’s 84th birthday. I bought her a dress, had her long time hair dresser (my dear friend) come over to do mom’s hair and ‘makeup’ . I spent two days reminding her of family names with picture flash cards. We had a nice gathering, a cake and she sat enjoying the day completely. But, the next day I got three, count them three phone calls, to ask me about her dementia. They thought I was over exaggerating her condition because she looked so good at her birthday and talked ‘just like she always did’. What is with people? Mother was in bed for three days after her birthday – recovering and she has not had a friend or family member visit for two weeks. I get so frustrated sometimes! Amy, Detroit
ME TOO! George’s family came to visit. I spent time reminding him of the names and cutting his hair, doing a good mask on his face to help his extra dry skin and bought him a new shirt.I made sure he was calm for the whole day before and got him up early with his pills so he could be ‘present’ when they arrived. He looked so good…no one even asked about his health condition.
I get it. I get the frustration and I can top it…so can every other care giver. There are stages to dementia and Alzheimer’s and through those stages there are peak days and down days. But only the care givers see those down days. It does make it hard on the care giver, because it looks like we are making up tales about the loved one. That is just how it is. We are the only ones to see through the smile and know inside the mind there is a blur…and that day the senior looks good and acts relaxed because we have given them good care before the event.
Family and friends just do not know what to say or do. They do not understand the many layers of care that are required. They come over and the senior boosts up their energy and ‘acts’ the part –then the next day they die back down and we have to scoop up the remains and start to rebuild. There is no answer to this. As your mom gets worse, the family and friends will simply drift away…that is what people do. So try not to get too upset over the situation. Accept it. If you find that you can no longer give care…then look around for a place that is within your budget to help your mom. We can not see the future…maybe we can care for them forever…or maybe we have to give the care away to another for the good of our self and our loved one…taking a day at a time is all we can do. I know it’s hard to do…I live it every day too!
Here is a listing of what my day as a care giver is like with George in the upper middle of his Alzheimer’s decent:
- Early rise to clear up the clutter in the house. This allows George’s brain to see through the house and not get upset or nervous. It’s amazing how confusing a bunch of newspapers and dirty dishes are to a senior with dementia.
- Light breakfast so George can take his pills with food. Served in bed, he does not want to get up early he is too tired in the morning rises around 11’ish, if I am lucky.
- Do my outside work with watering and any clean up, then off to the computer in the kitchen so I can work on my senior site and do my writing. I stay close while G is in bed in case he is in need of anything.
- Time for G to rise. I get his clothes ready and place them in the bathroom. He takes a shower with the tub bench for easy use 1-2 times a week depending on his mood. Other days it’s a sink clean-up…with me reminding him of his teeth and face. I have problems with his skin being really dry, so he wears Olay with sunscreen everyday after he washes his face. His ears are getting sores and his skin is so thin…I have to be very careful. His teeth are getting bad so I have to remind him to brush and use mouth wash for dry mouth.
- He walks to his lift chair and gets down and watches TV. I have to start the TV, get the remote in order for his day of TV and then he is able to use the up arrows to turn the channels.
- Phone begins with calls and I pick up the kitchen and do light housework until noon’ish. Then its time for a light lunch for George. I get him a protein drink early afternoon. I make him walk to the kitchen to get his decaf tea. I keep a quick heat tea-pot and he makes his own tea. It is an easy task and I encourage him to do a few things like that and folding his clothes during the day. As well as have the dogs in his lap so he interacts.
- I try to get him to do his exercises (very light ones) or walk up and down the hall. It is always a chore, he says his back hurts. He is getting weaker in the legs and I am trying hard to keep him mobile. I make sure he has doctor appoints on the community calendar posted on the wall in the kitchen and I order all his med’s and keep them filled properly.
- Afternoon I get him to go with me to the mailbox, or to sit on the porch or roof terrace for some sun in the summer, in the winter…I just have him come out in the kitchen for a while to chat with me while I bake or get the dinner going.
- There are always chores for me to do; George’s accidents mean more washing that usual and then there is a home to simply keep in shape. There is food to prepare, because good food it a key to health of any kind. I bake and I do projects. I check on George every 15-20 minutes to help him with getting up or down, or TV or re-charing the MP3 player. Not to mention reload Kleenex, little things by his chair etc. There are things to do around a home to keep it in shape and I do that each day. I’m also paring down things. We have been in our home for 30+ years. If we have to move, I need to know that I can pack without all the sorting. So, I do a room at a time and try to let things go to a charity or family that want them. Since most Alzheimer’s seniors are older…it is simply reality they will have to move, or have care and eventually pass on. Their personal and family things have to find new homes. So, I do address this issue and I am trying to sort through George’s pictures and such for his children to have for the family heritage. There is no putting it off…sooner or later, the home will have to be sold and move on…so its best to do it a little bit at a time so it’s not so overwhelming for you or the senior.
- I write as often as I can and about two times a week I go out to shop. When I leave the house; I have a small white board that I write down where I went and how to call me and I put the phone down next to it. I am not gone more than 1.30min and I call him twice. I leave my number written out each time, because he gets confused with automatic numbers in the phone now. That little white board is a great tip I got from a good friend 😉 George does not wander, but I tell him that I want him to say in the living room…do not answer the door or the phone unless it’s me. I have two small dogs and they do a great job keeping him protected in his chair.
- I often have to make sure he is going to the bathroom or ask him if he has any personal problems. He tends to cover them up and not talk about them…so I need to know. I can help with diarrhea or with constipation– but only if I know he has it. He has just recently gone onto using Depends and he finds them helpful. But, the transfer of using Depends was very emotional for him and it took a few days for him to settle down and use them properly. I worry about falls, so the changing of Depends means I get him very easy to wear clothing. Sweats so they just pull down and up easy for him. I am constantly reminding him to sit down to get dressed, his mind will just not accept that fact.
- The dogs go out and in – during the day, they are small and we have a back yard. The house has levels and we have to take them down the stairs to get to the back yard. I do not allow George to do that anymore…he can fall on the stairs. He is very unstable these days.
- George uses a cane, the walker is simply left behind him…so I am looking for the cane all day. He leaves it everywhere. He puts it in any room he visits and then leaves without it in his hand. So that means he is very unstable and often falls. Most of the time the falls are into a chair or he catches his self and is able to pull up. But often I’m called to help him regain his stand and get moving again.
- Everyday around 4’ish I make sure he has tea and a treat…it raises his sugar level and keeps him in a better mood. ‘Sundowners’ is a condition that many seniors face and it means a sour afternoon and evening if you don’t address it right away. I do not plan visits at that early evening time of day…we try to do anything important from 11-3PM.
- On some days there is a quiet time and I can get loads of work done. On other days; George sees something that bothers him and he tries to fix it. He will go out to the garage and get lost looking for a tool. He will take something apart and not be able to get it back together again. He will tumble while he is trying to fix something on a lower level…the days are always a mixture of ‘what is going to happen today?’
- If George has to go out, it takes a village. I get him up earlier, which makes him angry. I push him to hurry in the bathroom, which drives him wild. Then we get him in the car and off we go. I have a backpack with snacks,protein drink, his MP3 player, a special ID tag that he wears around his neck, extra depends and such in case of emergency. If the day is long, he will get very spacey and you have to lead him around and make sure he does not fall. In public we use his walker, or get a motorized chair. He loves to zoom around Walmart in a motorized chair…he feels free. (with me running after him…sad but true ;O )
- Nite- time he wants to watch TV. His TV choices have changed with his ability to understand words and story lines. Now, he watches current news shows and documentary type programs…he is engaged at the moment but can not remember long story lines. The Olympics were great…now we are stuck with summer re-runs.
- I do evening online meetings with my work friends and get things done in that fashion and then I am cleaning up and ready for bed. I go to bed around 10’ish but I do the computer, watch the news and listen to Coast2CoastAM on the radio till quite late in the bedroom. I call George into the bedroom around 11’ish and he often says he has to finish a program. But no later than 11:30PM he is in bed and listens to his MP3 player. He loves to listen to audio books, they keep his mind going. He says he hears too much background noise if he tries to be quiet. I guess his brain is unable to stop processing.
- His latest thing is narrating his dreams out loud. So, I have been having a hard time going to and staying asleep. He talks about his dreams and is asleep…and the dreams are disjointed and strange…so its always a hard thing for me to cope with late at night. Not to mention he does not get a real rest..but Alzheimer’s has that brain activity attached to it — so it will not be changing any time soon.
- Next morning it starts all over again.
Don’t think we do not have bad days. Days when George is in a mood and will not move, or his takes a fall and can not move. I can get sick and often really tired and we have to change our plans for the day. I try not to worry over going off our plans…life happens. I just keep on mission and try to keep George as calm as I can. I suppose I spoil him, but if he is calm…my life is calmer…so its just as important for me, as it is for him.
Blessings on all you do for your family….giving care can be hard and lonely…I want to make sure you understand that your senior cares about you…even if they do not put it into words. You are keeping them in a safe home and making their day filled with love…THANK YOU, francy.