Washington DC
A number of caregivers who have left comments or
emailed me have asked for my advice on dealing with their loved ones’
dementia. Since I have absolutely no
personal experience in that area, I can only offer second-hand advice that I
can’t personally vouch for. In two
previous posts (here
and here),
however, I did review the book Contented
Dementia, which offers a good general framework for thinking about the
issue. I’ve also recently come across a set
of “Tips
for the Caregiver” from the Bureau of
Geriatric Psychiatry in Tuscaloosa, AL.
The tips are taken from a larger “Caregiver
Packet”* which is also well worth reading.
Here’s a bit of a summary (in no particular order):
I’ve used the masculine pronoun throughout to keep clarity.
- Remember that the patient is dealing with confusion, anxiety, loss of self-esteem, irritability and feeling of depression.
- Before asking the patient to do something, address him by name to get his attention and maintain eye contact. Ask only one question at a time and give him time to respond. He is having to think a lot harder than you would to answer the same question. Allow him adequate time to respond in conversation or perform an activity. Rushing him will only increase his confusion.
- An Alzheimer patient has difficulty coping with change. Try to maintain a regular daily routine; it will help the patient maintain his abilities and may also save you time and energy.
- Performing his own daily tasks (eg dressing) helps to maintain his self-esteem. If you help him before he really needs it, he may forget how to do it for himself.
- Break down all tasks into simple steps. Tell the patient slowly, one step at a time, what to do. Giving too many directions at one time, or giving them too quickly, will increase the patient's confusion. If the patient gets upset and becomes uncooperative, stop and try again later.
- Keep your expectations of what the patient can do realistic given his degree of impairment.
- Use humor whenever possible, though not at the patient's expense.
- Do not disagree with made-up stories or mistaken impressions. Do your best to understand his reality and respond to it. Do not contradict him. (See my posts on Contented Dementia (here and here).
- Be consistent. If you say that you are going to do something, follow through with it.
- If the patient repeatedly asks a question, remember that he cannot remember the answer you have just given him. Reassure the patient that everything is fine and that you will be with him and will help him.
- Repeating the same act may be meaningful for the patient and provide relief of tension; if he spends 20 minutes contentedly wiping the kitchen counter, let him continue.
- If you do get angry, use "I" statements as opposed to "you" statements. Example: "I'm feeling angry, I need to rest now," instead of "You make me so angry, I can't stand to be here.” Remember, he can't change his behavior for you. Also, he is frightened to see you angry at him when he feels so helpless. Talk to a friend when you need to blow off steam. Support groups are a great place for this.
- Always remember the importance of love and affection. Sometimes holding hands, touching, hugging and praise will get the patient to respond when all else failed.
- When he can no longer communicate verbally, keep talking to him about those things that were important to him, such as yourself, family member, etc. Speak clearly, say names of people he loved, touch him, massage his arms, feet, head and back. Touching is the greatest communicator of love.
Modified from Caregiver
Packet AlzBrain.org *
Again, I have no personal experience, but these
suggestions make a great deal of sense to me and may help some of you
caregivers.
* Clicking on
this link will produce a pop-up asking whether you trust the link. I believe it trustworthy and you can proceed.
Wonderful, wonderful suggestions! I have shared this on my book's Facebook page, and already people are agreeing that what you've said here is spot on. Thank you for writing this.
ReplyDelete--author, "Inside the Dementia Epidemic: A Daughter's Memoir"
I have been reading your blog for sometime now. My mother died from complications of Alzheimer's Feb 12. For the last several years of my mom's life my sister and I talked with her everyday and visited monthly or more. (We took turns as we live 4-7 hours away). She was at home with my Dad and caregivers. The last year she was very agitated and frustrated. I learned to go into her world and not expect her to be in my world at all. I discovered that many of the words she used didn't mean what we thought they meant and I would try and figure them out based on what was happening to her that day and previous conversations. For example: The movie "Grumpy Old Men" infuriated her and she would hit the TV. This is how I found out. I would get a call and she would tell me that Phillip Roth was there and she didn't like him and it was making her angry. I knew she was watching TV. Found out the movie title from my Dad. Mentioned the conversation to him. He said Mom hated Phillip Roth. I knew there was a book right behind the TV set by Phillip Roth. What I deduced was that one of the characters in the movie was upsetting her. My Dad nor the caregivers could figure out what was bothering her. This is the process I went through whenever she was upset. I would call on my memories of what she like and didn't like when she wasn't sick and what was going on in her life right them. I have many examples and someday I would write them down and send them to you. Some are quite funny. I could make my mom laugh almost to the end and she could make me laugh. We forged a different relationship when she was ill. In many ways it was a better one. Thank you for writing about your experience and that of others. I am in the process of creating a series of artworks about Alzheimer's and my mom (and my grandmother who also had Alzheimers). My goal is to show that the person is still there and maybe in different ways and we can still connect and have enjoyable relationships. I know I did.
ReplyDeleteThank you , Carrie. What you're describing is a beautiful process that, I suspect, takes a good deal of time, emotional and intellectual openness, creativity, and willingness to put yourself in another's shoes no matter how bad the fit.
DeleteI look forward to your artwork and hope you will find a way of sharing it with us.
These are all good and insightful suggestions, but I would add the caveat that you should adjust them according to the level of impairment the person is experiencing. My husband is still functioning quite well at a moderate stage of early-onset AD, so I’m trying to keep him challenged by asking him questions, varying his daily routine, and giving him tasks to accomplish. I do correct mistaken impressions (without being confrontational), because he has always been grounded in reality, and I believe he wants to remain so. For now, at least, I’m trying to keep us both living a life as close to normal as possible.
ReplyDeletePat, you make an important point. Unfortunately, so much of the literature aimed at the caregivers to people with Alzheimer's is more directed at the most ill. The book Contented Dementia, in my opinion, made this same mistake, and I got taken in that time, too. So, yes, absolutely, the tip above needs to be tailored to the needs of the individual. Ultimately the caregiver is the only one who can know what is and is not the most appropriate way to work with their loved one. Look upon the list as some suggestions that may help you think about your own situation, not a recipe to be followed slavishly. Thanks for writing.
DeleteWhen short term memory is impaired, usually for a much longer time, long term memory still works. Discussing the good ole days, their children, their farms (hey, I'm in Iowa), their jobs, the people that respected them when they retired from the job after 40 years. People here in Iowa like to remember the winter of 1925, it was the year the rabbits froze in the fields, so everybody went out with burlap bags and picked up frozen rabbits, took them home and canned them, and lived off of them through the winter. They usually love that story. Canning green beans, sewing children's stockings, Even if they are not very verbal, after telling them what you have heard about the olden days, they will usually smile while you are talking and say "yes" a few times. They tend to look off into the distance as if remembering, with a smile. If they lose a word, just sit there relaxed, they will struggle to remember it, or will replace it with a word that makes no sense, but then they will keep on going as if it was the right word. I think it should be called "conversation with love", because you just do and say what you know will make them happy. Most caregivers at home know their loved one very well, you can remind them of your marriage, your children, photo albums, their parents, etc. People in a long term care situation, have to work a bit to find out their interests. But either way, its just a way to show love and care. with women, I always put my arm around them and when we are laughing, gently hug. With me, I don't do that because they may misunderstand, so I usually pat their back or their arm as I get up to leave. But the idea is to make them feel connected and loved.
ReplyDeleteI'm sorry that you (and those who love you) have to deal with this---but I am so glad, and grateful, and impressed that you have decided to be so honest and share this journey. My grandmother had pretty severe Alzheimer's for the last three years of her life (living with me). So much of those years was incredibly hard; I look back now and am astonished I managed it and survived. Literally. It's very hard. Yet, it taught me so much and I am so grateful that I was able to be the one caring for her. I read an awful lot of books and spoke to numerous professionals...in the end, though, all that truly works is understanding what is happening to the brain's processes, accepting that, and working WITH it. There were many exhausted, tearful nights with sundowning and over 300 falls (she could not remember that she could no longer walk)---but much of the time she was my grandmother: she was just living in 1936. So I did, too. I learned to be a quick and talented liar ("We can order that dress for your mom on the internet, Grandma. Here, I'll do it for you and then she will have it just in time for Christmas!") and to be grateful for the film "Guess Who's Coming to Dinner". She loved that film, and it was brand-spanking-new to her every time it came on (sometimes 4 times in one month). That would give me some quiet time, as long as I walked through the room and laughed at the right moment and said Tracy & Hepburn were the best ever. I was grateful for a large load of towels in the laundry, because folding those (over and over) for a few hours made her feel valuable and content. Two strips of duct tape on the floor, where I needed her to place her feet when transferring to the commode worked just fine with impaired depth perception. You just learn these things and if you love, then you just do them. While much of it was terribly sad---of course it was! And hard, and expensive, and exhausting!---she was pretty happy in 1936. I just went wherever she was and we managed.
ReplyDeleteShe has been gone since 2009. My heart and body needed some recovery time....but my desire now is to work with these patients. Because many people can't do that job very well even though they are allowed to. I would like to be the caregiver I wish I could have found for her. That I hope someone would be for me.
It is my hope for you that you are able to be happy in whatever year you land in.....and you are right, there comes a time when love is not enough; a time when love can no longer compensate. At that point, loved ones will need to ensure you are safe and visited often, but not destroy themselves trying to overcome something they can't get their hands on. I would not want anyone to go quite as far as I did; I couldn't make anything better, in the end, and it destroyed a lot of things I can never get back for my own life. So, loved ones must exercise some loving, practical, common sense, too. I would do it all over again, even knowing the outcome and sacrifices. But I hope it can be eradicated. I have recently read of a connection between a gluten sensitivity and aggravated symptoms of the disease. Wish I had known it then, to see what happened if I DIDN'T give her the wheat toast each morning!
I will be reading as you are on your journey. Thank you for being open enough to share it.
Thank you for sharing your story. I hear frequently about that time when the decision has to be made about care in an institution. And it's such a tough decision. That's one reason I hope that families can sit down ahead of time and let each other know how they feel about it but NOT make promises until they get to the situation. Spouses, especially, can almost destroy themselves out of misdirected guilt and misunderstanding about what is really loving and compassionate. You seem to have survived, and I'm grateful for that. But as you say, "loved ones must exercise some loving, practical, common sense, too" in making these decisions.
ReplyDeleteThank you for writing.