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One of the hurdles in care giving is realizing that you ARE a caregiver!! We offer these tips for YOU!!
Imagine being married to your husband for over 50 years in an equal partnership filled with love and romance, in which you've relied on each other for strength and support over your lifetime together. For years you've been respected as active and involved members of the community. You look forward to spending your golden years together traveling, relaxing, gardening, dining out, and taking it easy for a change.
Then, imagine that your strong, intelligent, and dependable husband begins forgetting things, reverting back to childish habits, and his personality completely changes. Gone is the patient man you've always known, replaced by one who gets severely frustrated over the minor task of choosing clothes for the day. Before long you've had to admit to yourself that he's come into the early irreversible stages of dementia and life will never be the same again. Suddenly, you must care for him as doggedly as when as when you had preschool age children in the house. Now it becomes a major task just to go to the grocery store.
This is the story of one brave woman in our community.
In the interest of privacy names and details have been changed.
John and Mary are both in their eighties. They have been married for over fifty years and have three grown children together. Starting about three years ago, and quite a few years after the two retired, Mary noticed some changes in John. He began to forget things. He began to have problems with his eyesight. He started having trouble with driving, getting confused about where he was in the town in which he'd lived for all his life. He would become frustrated very easily, and even became uncharacteristically verbally abusive. Also, the obsessive compulsive disorder which he'd always had and kept under control for many years became markedly more of a problem. It became more and more clear to Mary that John may have dementia or Alzheimer's disease. Life as she knew it would change in major ways in a very short time.
Soon after Mary noticed his changing personality, she had to deal with the fact that John absolutely could not be left alone. She knew he could have been a danger to himself by falling on the stairs, or accidentally starting a fire. He also became nervous to be left by himself, in part because of his deteriorating eyesight and in part because of his confusion. Instead of keeping herself and him holed up in the house all the time, Mary decided that she wanted to keep him as active as possible so she signed him up for adult day care through the senior center. This would be good for him socially and for her to get a break that she desperately needed.
In order to get John off to the center the day starts very early for Mary, around 5:00 am or so. She gets up and showers and dresses herself, and then she wakes him up. This is when things get complicated. John starts off the day by hiding things, like his wallet, and compulsively moving and straightening things, which relates to his OCD. This makes it very time consuming to get him going in the morning and she has to continually monitor him. She gets breakfast underway and the home health aide from Community Health Center arrives soon. The aide helps John shower and dress because he will not let Mary do it. He is very picky about his hair, she explains, and he primps, so again it makes for a very time consuming routine. The OCD manifests again as he puts things into his pockets in specific order ...there are napkins, coins, a comb, and chewing gum. If it's not just right it has to be taken out and done over and over again. Then the senior van comes and off he goes. Mary feels bad to say it but she says it's her favorite time of the day. Now she has most of the day to get her own chores and errands done uninterrupted.
When John comes home from daycare he says the same thing everyday: "Where do we go, and what do I do?"
Usually he takes a nap, and then they spend the evening together. Due to his eyesight problems, he can't enjoy his love of reading, and he can't watch TV. He can only listen to the TV, and Mary often reads the paper to him. He is affected by dementia-related repeating, and he often asks the same question over and over, either because he forgot the answer or because he wasn't satisfied with the answer in the first place. This makes it hard on both him and her to read the paper, or to even have a conversation.
John had become a night owl, and refused to go to bed when Mary was ready, so for quite some time she had stay up to keep him company because he got too scared to be alone and awake by himself. Mary said this was and still is the worst part of her day, because she's too tired to be patient anymore by that time of night. At first it baffled and frustrated the exhausted Mary, but she has adapted somewhat by setting a firm bedtime, and coaxing him to wind down early.
Aside from being sleep deprived, Mary has her own health issues. Her shoulder gives her problems and she has a limited range of motion, which makes it hard to lift anything and cook meals. She has fallen several times, and has bad knees. Her doctor told her that she would likely need both knees replaced in the future. It has become impossible for her to do maintenance on her home, and she even has to wait for someone to be home with her to do laundry down in the basement in case she has trouble on the steps.
Mary worries somewhat about finances, on top of everything else. She is concerned about the cost of buying a new furnace, which will need to be done soon, and also the rising costs of "just about everything." She says her financial situation is pretty much ideal other than that, and she feels that the cost is fair on medicine, healthcare, daycare and the home health aide. She and John manage well with their retirement income and Social Security. She attributes her decent financial situation to her habit of always being frugal, and also the daily meal she gets from meals on wheels. That saves her money at the grocery store and on ordering out.
Another area where Mary feels satisfied is with the programs and support services she has received with us at the Office for Aging. She has taken advantage of the Alzheimer's support group, which has helped her find tips to deal with John's difficulties, and she's had to opportunity to vent with people who understand. She also took the AARP class here at OFA, which helped her with her driving skills, and even reduced her insurance premium.
Well-meaning people have tried to convince Mary to relocate herself and John to senior housing, where there are people around to help in an accident, and everything is conveniently on one floor. Mary is reluctant to do so for several reasons, including the fact that John had put so much work and so much of himself into their home, and she knows it would really hurt him to leave. It would also confuse him immeasurably. She likes her home and her neighborhood and is comfortable there. So much has changed already, and it's one of the things that she has left of the life she's always known.
Looking back on how life has changed, Mary says everything has changed. She feels that she has gone from being John's wife to being like his mother, and just that change has affected her very much emotionally. She has also had to learn to drive much more than she had before, and she has lost the better part of her independence so she can't go on trips or spontaneously go shopping or to a museum with friends. She misses her freedom and says it certainly hasn't been easy. Some people in her family have ridiculed her for choices she has made during this ordeal and she has a strained relationship with them now at a time when she needs them most. Through all of this she remains surprisingly upbeat and looks to be in pretty good shape.
When asked what it is about John that she still truly enjoys, or what makes it all worth it, she said with a smile "that he has held on to his sense of humor through it all, and he still makes me laugh."
Andrea Fettinger, BA, MEd,
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