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Thursday, 10 May 2012

Dementia Patients

By Mickey Rogers of This, That and the Other

For the past six months, Bev and I have been caring for her father and her stepmother. Sadly, both are suffering from dementia.

Although they are in assisted living, just about every day we are actively involved in their care. These six months have been a great learning experience; we’ve learned what works and what doesn’t.

None of the family members realized how bad the situation was when the folks were brought to assisted living. Now I wonder how they survived in their home.

We discovered that they were unable to do things that they had been doing just the previous year. For example, when they first moved to assisted living we bought my father-in-law a new computer. Soon it became obvious that he could no longer deal with something so complicated. This and other discoveries led to rule number one.

When working with dementia patients, “keep it simple.” As the disease progresses, even what most of us consider to be simple tasks become difficult or impossible for the dementia patient. My father-in-law has difficulty using a key to open his door. He can no longer play board games or card games. He has difficulty turning on his TV set and using his telephone.

Naturally, he becomes upset whenever he can’t do something. The key to the problem, therefore, is to make everything as simple as possible.

We’ve attached a large whiteboard to the inside of his apartment door. There we list the day’s activities. He can follow the directions on the board, but writing information on a calendar does not work.

The best TV set for him would be an old fashioned one that had only a channel changer, a volume changer and an on-off button on the set itself. Likewise, the simpler the telephone, the less frustration for the patient and the caregiver.

Bev has spent many hours on the telephone trying to help him turn the TV to the channel he wants. Sometimes he tries talking to her through the TV remote or he talks into the wrong end of the telephone.

We’ve learned not to sweat the small stuff. The other day I noticed that my father-in-law was wearing one blue sock and one white one. To have pointed out that fact would only have embarrassed and frustrated him.

In the larger scheme of things, it just isn’t important enough to worry about. It’s much more important to make sure he is getting the proper medication at the proper time. It’s much more important that he is not being isolated from his fellow human beings.

The dementia patient should be encouraged to participate in various activities. Numerous types of entertainment are offered in most assisted living homes. Most dementia patients, just like human beings in general, need stimulation and socialization.

Whenever possible, the dementia patient should be allowed to make his or her own decisions. Maybe the patient no longer has the option whether or not to drive an automobile, but he can still decide if he wants to attend a sing along in the cafeteria. Making decisions allows one to maintain some shred of dignity.

The caregivers need some time away from the patients. When brothers, sisters, other relatives and friends visit, the main caretakers should take some time off from the wear and tear of this very difficult job. Both the mental and physical health of the caretakers are at stake. Exhausted or ill caregivers are of little value to those who depend upon them.

For most dementia patients, long-term memory retention lasts long after the ability to process the present. Therefore, one way to start a conversation with a patient is to talk about his or her childhood. I’m amazed that Bev’s parents can recall so many things from the past. Of course, eventually this terrible disease will rob them even of those remembrances.

As a caretaker, one must remember that the patients do not do disturbing things on purpose. My father-in-law, for instance, often loses his apartment keys. One time, after a thorough search we could not find the keys, so we had to have a new set made.

When we visited the next day, he was extremely upset. Once again he’d lost the keys and he was afraid that Bev would be upset with him. Putting her arms around him, she said, “Dad, I’ll never be angry with you, no matter what happens.”

Later, during the drive home, I asked Bev if the same went for me. “No way!” she replied. Oh well; I tried. I guess everyone needs somebody to get angry at.


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Posted by Ronni Bennett at 05:30 AM | Permalink | Email this post

Comments

Just lovely.....thanks. We found the very most important thing was to visit every day.

Thank you so much for a clearly written description of this situation. I too, am a caregiver with a variation on your theme & no matter the variables it is difficult to face for both caregiver & patient. I'd add only one other thing: I wish I had a dollar for every person including family & friends who tell me to take care of myself......take some away time, do something nice for youself, etc. But I've never had an offer to help me do this:) So we just plug along & do the best we can. Dee

Thank you for sharing your experiences expressing the love you have for people who need care. My mother made hard decisions to obtain needed help in a care facility across the state from the small town in which she grew up and never left. She wanted to be near her children but avoid being a burden. It was a time in her life that I most admired her strength and independence.

I don’t know what is considered a good end to our lives, but this type of ending certainly is among one of the most undignified.

I understand where Dee is coming from…we need more than words when caring for a loved one.

Lovely article. I am a fulltime caregiver, for my 92 year old mother-in-law with dementia. I have to agree with Dee about disappointment in people who give advice, but do not help, and those who say they are going to come visit, but never follow through. Sadly, the majority of these are fellow church friends of my m-i-l's who saw her for the first time in over a year at a picnic last summer. Many came up and made a point of saying they would call or stop out and never have. The only call we've received from anyone at her church was about coming out to serve Communion. They were supposed to call back, and haven't yet, but I have decided that my answer will be, since she won't recognize anyone, nor understand what's going on, is that it is my feeling that she is in a state of perfect grace as she is, and that Communion is no longer necessary. I mentally calculated that she has probably taken Communion nearly 4,000 times in her adult life. That should be adequate.

A well written narrative on a sensitive subject. I have worked with people with developmental disabilities and dementia and in my experience, physical activity has a positive impact on easing frustration, memory, and overall living skills. Simply going for a walk, or pushing a wheelchair, or engaging in a group project will work. Thanks posting this.

My Dad had dementia for about 6 months before he died and one thing I found that helped him was to agree with everything he said even if it wasn't true.

I would visit and find him very agitated because he had to testify in court that afternoon and he didn't want to give evidence about his friend.

That actually happened almost 40 years before but in his mind that case was TODAY.

Instead of arguing with him that it occured many years ago, I would say the Judge called and the case against his friend had been dropped.

That would calm him right down and he would eat a nice lunch and take a nap instead of fretting about it all day.

It usually worked and I never regretted that I lied to him almost every day.

Great piece, very informational too and good hints about what to do if situations...Daunting to think some percentage of us will be candidates for this malady..Again I am awed by this giant circle of friends..

I admire and laud you for your loyalty and determination to be there for your loved ones. Although I was spared that in my parents, I am now watching several friends developing dementia and/or caring for spouses with dementia and it's so difficult and exhausting.My main contribution, since my health does not permit me to do much physically for them, is to help them find solutions and accept that they can't do it all themselves.

What a touching piece and the comments as well. My mother had a stroke, which is so similar to instant dementia...but then she got dementia as well. It was devastating for our family, especially my father who never understood that she could not be held unreasonalbe anger toward him. The tragedy of brain changes or injury is that it robs both the family and the victim.

Touching and informative post Mickey, and all the other comments - I think the point Nancy made re keeping the person calm even if a lie is necessary was a good one - also although patients lose the ability to talk about their memories - we can hope that they are still leading an internal life which allows them to roam through all those happy memories.

I'm going to try and remember what Nancy said. Why correct someone when they can't remember. Just go along or lie if necessary in order to help them be at peace.

What a complete picture you painted of coping and struggling with the gradual loss of memory that is part of dementia. The practical suggestions: Patience, common sense and remembering not to get bogged down with petty concerns are reasonable. Learning not to get upset by a loved one's memory loss is hard on caregivers, but focusing on mistakes as the disease progresses helps no one.

Thank you for sharing your sensitive and intimate experience with dementia. It is, indeed, heartbreaking and challenging and exhausting. To share your experience may help another, and that is HUGE in this illness.

Your words of wisdom are helpful and comforting. Thanks!

Thank you Mickey for your senitively, yet spit it out as it is, article. I have a long time background in nursing, thought I knew it all in terms of dementia. Am now on a new learning curve with husband diagnosed recently with 'early dementia.' He was the one who said , 'find a doctor who will tell me whats going on in my head'. The geriatrician we have seen has him on a series of tests ..endless appts. But we must know what type of dementia, as there are different treatment options. It is good we can as a family talk about it, laugh when things go wrong, but be aware of safty issues etc..We are on the beginning of a long journey, we must make each day count. Thanks again Mickey for all of your tips in management, and God Bless all those who have commented on this too familiar circumstance

Unfortunately, there is a large group of us in the 'sandwich' generation....
..... My mother will be living in our home 4 years this Fall.
We have one daughter left at home that's 15 now. I have recently had to put her in therapy to try and 'deal' with my mother's bitterness and hatred.

You see, there are those that age and are mellow and sweet. And then, there are those, like my mother, whom has been 'difficult' at best thru life, getting more angry and bitter as time goes on.

I have a brother and sister that either are unable to or don't WANT to help.

My mother's buried 2 husbands... NEITHER left life insurance policies nor pensions.

Having gifted her home to my sister's son, she is still ineligible for medicaid.

Like Dee, i KNOW these people that say 'ask' for help and never even call.

We ARE alone, and short of it being medically necessary, the burden lies here. I have ALWAYS loved my mother. I THOUGHT that giving her security, a loving home, all the help and care she could need or want for would make her more pleasant, even HAPPY !

boy, was i wrong.....
and i WISH things could be different...

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