It never dawned on me that some day I would be a caregiver. I had heard stories about grown up kids taking care of ailing parents but I never thought that it would happen to me. I know it would have been even more difficult if I were still working and had children to raise.

Upon retirement I was getting used to the idea of not going to work. I also was looking for enjoyable things to do plus completing various projects I had planned. I had almost a year under my belt and was contemplating the idea of getting involved in something. That idea was quickly discarded when my mother’s health began to deteriorate.

My wife and I discussed taking care of her because she was the last elderly person alive on my side of the family. My brother was still working so it wasn’t possible for him to give that care. My wife kindly agreed that we should do this. I am very grateful to her for becoming involved in that care. She took the responsibility of her medications, doctors’ appointments and even bathing her. She would also sit with her while I went to coach. Mom takes 13 pills in the morning 3 in the afternoon and 4 in the evening. With that many pills vigilance is a must to insure that they are not only taken but kept at certain intervals. Mom had corneal transplants so there were drops and a gel to be put in her eyes both morning and evening.

The first scary moment occurred while moving her up to bed on night. She got to the living room where we usually let her sit to catch her breath before going up another flight of seven stairs. As she walked over to sit in a chair, she started to wobble. I was behind her and kept her from falling onto a glass table lamp. In seconds she collapsed on my wife and I. She began to turn blue so I tried to administer CPR while my wife called the paramedics. It was difficult to give CPR because she was so tense I couldn't tip her head back to open the airway. Eventually I got the airway opened and she began breathing on her own just as the paramedics arrived. It was a late and exciting night. We found out later that she went into "A" fib and that was the reason for her losing consciousness. After medication and eventually having a pacemaker installed that problem didn't happen again.

One of the first things a caregiver must do is to adjust their outlook/attitude. It’s like having another child. Lots of time, effort and patience will be needed because it does become a full time job. I had to put my life and retirement on hold. For a while she was able to do most things for herself but then it moved to a point where she couldn’t be left alone and needed some help. It quickly became a 24-7 job including feeding her, taking her to the bathroom and putting her to bed. If there is a creator, he has allowed me to watch the life drain out of my mother. I’m not sure if that’s a blessing or a punishment. The more I think about it the more it seems to be a little of both.

Just when you think things couldn’t get worse they inevitably do. There was a period of time that mom would have dizzy spells and start to vomit. Two more pills were prescribed to alleviate the problems. A few months later both problems subsided. Then for the last six months my wife, almost daily has been traveling to Park Ridge because her aunt’s health took a bad turn. That left each of us caring for an elderly person. I could not say anything because now we were going through the same process with two people near and dear to each of us. Eventually her aunt passed away but it didn’t stop the traveling because her uncle at age 89 needs help with his affairs. He is alone for the first time in 66 years. He seems to be getting along very well but his vision deteriorated so much that he can’t drive anymore. Just recently my mom’s health began failing a bit more. She had a weight gain of 5 lbs. With this her breathing has become labored and little walks around the family room became very taxing on her physically. She has gone further into congestive heart failure (CHF). The six water pills she takes during the day are not working as well as they once did. Now we have to closely monitor her weight. If she passes a certain weight, she has to take another different water pill. A person can continue on water pills as long as the body reacts to it. The problem as I see it is that the kidneys may not be doing their job. If that continues to occur, renal failure might be the reality of her future.

We have been involved with home health services four or five different times. It sounds great because these people come to your home and check on her condition. Therapists do various exercises with her and you have to do them on the days they don’t come. The bad feature is that you can’t take her out while the hospital home care is involved otherwise Medicare will not cover the expenses should something happen while away from home. That would be 6 to 8 weeks or more depending on their evaluation of her condition. After two or three times it becomes a pain in the neck.

The hardest thing for me is, knowing that there will be an end sometime. I just have no idea when it will be. It’s easy to care for someone when there is a time limit, like taking care of someone for the weekend or for a week or two. At least that way you know that there is an end and when it is. For my wife and I there is no end in sight. I have learned to admire those that have cared for a parent 10 years or so. My short time so far seems long and difficult. One always entertains the idea that a parent will be around forever. I have realized that she will die at some point, even with the best help I can give her. Our original decision was to care for her in my home for as long as possible. To me, that meant until she falls and breaks something, where she would be bedridden or if she suffers a stroke or loses control of bodily functions. That’s when I would consider a nursing home. She hasn’t reached those milestones yet but she is losing strength and the desire to live. Being involved in something like this is like seeing the beam of a flashlight dim as the battery wears out. There is nothing that can be done to change that.

In a discussion with my dear wife I told her that if my mom begins to fall, do not get in a position where you can injure yourself. My rationale was that mom’s life is near the end and I don’t want my wife to sustain an injury while trying to be helpful. Mom weighs185 lbs and if she passes out or falls neither of us can handle that weight especially when it’s dead weight. The best we can hope for is that if she does fall, she doesn’t hit anything that could leave her with a more serious injury than just a plain fall.

One of the most difficult things to deal with is when she doesn’t remember who I am or where she is. Some is dementia but it may also be the result of mini-strokes. In either case she doesn’t recognize me, her own son. My brother takes her out to eat occasionally and when she returns, she can’t remember where or what she ate. Occasionally she will ask about her sister and more recently about my wife’s aunt. She just doesn’t remember them passing away even though she attended both funerals. We re-explain everything and then she seems to remember.

Patience is something a caregiver needs. It takes my mom 2+ hours at times to eat breakfast. She loses track of time very easily. In the bathroom she will sometimes fall asleep if not constantly watched. I have thought of it as "she has no where to go and all day to get there". She is losing her will to do most things. All she wants to do is sleep and I won’t let her do that even though it would be a lot easier on me. I know that if I leave her in bed, she will lose more strength and balance.

A good sense of humor is also necessary for a caregiver. In the midst of getting ready for Christmas at our house, my wife wanted to bath her. Mom doesn’t like to bath when it’s cold outside. After she was finished, I helped her to her chair and turned to my wife and yelled, "You can stop cleaning the house now I think we found the source of the odor!" Mom laughed along with the rest of us which was good to see. Most times she is grouchy. When I try to wake her in the morning, she pretends she’s sleeping and hopes I give up. I keep trying even though she tells me to go away and leave her alone. I am persistent and have won the morning battle thus far but it gets more difficult to remain persistent. Occasionally she will rebel while in the bathroom. She pretends to be asleep or refuses to finish in the bathroom.

We take mom to an adult day care center a couple of times a week. I agreed to do this knowing that a registered nurse was on duty at the center. It’s good for her and us even though I worry about how she is doing. We get a little break and she gets some stimulation. That stimulation comes in the form of activities (games), a change of scenery, sing alongs, crafts and being with others her age. She grouses about it now and then but she really likes being with the people there.

I have been thinking that how long one lives is dictated somehow by the genes. That is assuming that one doesn’t die in a motor vehicle accident or something like that. My dad and my uncle were brothers who were two years apart in age. My dad was the younger one but eventually they died at the same age of 78. My mom and aunt were sisters. They both had breast cancer and went through the same radical mastectomies. My aunt died at age 89. My mom will turn 88 in January. My assumption is that when mom reaches 89 that the genes will dictate the end. This is all conjecture on my part and might be a way of coping with the uncertain length of time she has left.

I have to say that I have been a little remiss in my duty to take care of myself. I have tried to do something for me which was ride a bike or play golf during the summer. Now that the winter is here I don’t have the time or energy to exercise like I should. The daily grind somehow drains a person of energy to do something for themselves. However I do get to spend a couple of hours out of the house with my coaching.

I would like to thank our village for having the foresight to have a nurse and an aide come to check on my mom. They were my safety net after other home health services discharged my mom. This service kept my mom alive longer than if it weren’t offered. I would especially like to thank the nurse and the aide for the effort and compassion they showed my mom during this most difficult time.

Mom passed away about 9 a.m. Sunday morning 1/30/05. The above wish I made was enhanced by a higher power. She was pain free, asleep in her own bed and in her own home. I have no regrets other than I will miss her immensely. After her internment I will have to make another attitude adjustment. I will have to pick up my life and learn to move forward without her.

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