Alzheimers Brings Out Weakness and Stamina

Learning that you’re not as strong emotionally as you thought you were is a hard pill to swallow. I’ve always thought of myself as stable, secure and pretty well grounded but over the last few years, our family has been dealing with my father’s alzheimers disease and I’ve seen myself falter and not as strong as I once thought. Since all of this, I’ve encountered seemingly every emotion from complete happiness to worry and even anger.

This disease is as we read about, being that it is progressive and goes through stages.Barry Reisberg, M.D., clinical director of the New York University School of Medicine’s Silberstein Aging and Dementia Research Center has a 7 step symptom chart that pretty much sums up the illness:
Stage 1: No impairment
Stage 2: Very mild decline
Stage 3: Mild decline
Stage 4: Moderate decline
Stage 5: Moderately severe decline
Stage 6: Severe decline
Stage 7: Very severe decline

It seems that Reisberg has captured the essence of what will occur during this sickness. The situation in dealing with this illness is that it definitely affects everyone involved in the family, even those extended out including not only children, but grandchildren and even other family members and friends. Many are affected by what occurs during this 7 step process and it is difficult on everyone. In fact, it can cause raw emotions as feelings are sensitive, the load becomes heavy which could cause tears to flow and tempers to flair. Feelings get hurt and the thought that events can’t be controlled leaves one with worries about the unknown. Life occurs for everyone while this is all going on and with all of the happenings and this added in the mix, there is great wonder about it. Looking back, I don’t think it can be helped. With distance, time, events, schedules, endless changes, personalities and people involved, it’s part of the whole event and so I’m glad to share the information because it could help others realize that even the angst in dealing with it all with time, space, people, events, financial questions, medical evaluation and more emotions are all a part of this grieving process for that’s really what it is.

Here are the stages of alzheimers proposed by Dr. Reisberg:

Stage One
During the early stages, family members individually begin to see little things occur that indicate something is a little different with the family member. My take on it is that these things are noticed but no one speaks of it or talks about it. I’ve learned this in realizing that later down the road things are mentioned and thoughts provoked about what occurred a year ago or in times gone by. In other words, it finally get discussed but down the road.

Stage Two
The decline begins when small things begin to occur once in a while. For example, keys are lost, glasses cannot be located and hearing aides go missing. These are really minor things that become major as the traveling to and from the locks smith’s to get a 2nd set of keys is made, making appointments for new glasses and huge bills for expensive hearing aides. Here begins the caretakers running back and forth and trying to live life while caring for the family member.

Stage Three
When an adult cannot any longer prepare meals and provide those necessary things for eating and drinking, things are getting pretty serious. During this time, my father was still driving. We were not happy with this choice of him being on the road and did all we could to discourage it for our parents safety and the safety of others. One thing I found during this time is that there came a time that while my parents wanted to eat and were determined to have regular meals but they could no longer shop for the food, prepare the food or “get it together” beyond making a cup of coffee. This stage of our process was at least 3 years ago. So for 3 years, our family has been in some way being sure they had 3 meals a day. The first year, each of the 5 of us provided it and then we began having someone provide for this need.

Stage Four

When my Mom ended up in a rehab and was recovering, my father was so out of touch with what was going on, we knew there was serious problems in front of us. He did things like get up in the middle of the night and try to get in the truck to drive to see her. One night, I heard the truck crank, and ran outside to wave him down and finally get him back inside to go to sleep until morning. This type of behavior was erratic and wild on his part so we knew, the disease was bringing on more and more problems.

Stage Five

During this stage of moderately severe decline, dad was in the rehab facility. He would not cooperate with nurses, and refused rehab assistance in terms of occupational and physical therapy. He could not reason that he was there to get stronger and thereby go home after his strengthening period. As a result, he got weaker and weaker. He was still aware of his situation early in the mornings for he was of the old school and did not want women changing him so he still was aware enough to pull up his blanket to hide himself or refuse women from changing his clothes. On the one hand, he could not care for himself or even walk at this time but his mind would not process that others were there to help him dress.
Stage Six
During the severe decline time, daddy could not walk or talk. He was at a point of sitting in a wheel chair all day long and of late, in the bed. My mom would hold his hand and he would respond to her love and care slightly but he himself was really in a world of his own. At this point he could not feed himself or meet his own needs in any capacity. He was a true alzheimer’s patient in a latter stage.

Stage Seven
The day we took our dad home from the rehab center is the day I feel he fell into this category. We worked in an effort to get him home. For about 3 weeks family meetings were held, jobs were assigned and accepted, rooms, closets, and house situations were changed up. We prepared for his home coming. A deck and ramp was built on the front of the house to give him access to the house and yard with ease. We prepared as best as we could for his being in the home that he built but the final decline was already set. On the morning he was transported home, he really never gained any consciousness to speak of. He has opened his eyes off and on but on a whole he eats and drinks little and has laboring breaths. Was he satisfied to be in his own home and was able to let go? We don’t know but we did all we could to bring him home thinking maybe there might be a turn around. At this point it has not come.

During this whole ordeal, I have found that I, myself have had feelings I’ve never experienced. I’ve felt left alone, abandoned, betrayed, hurt, sad, frustrated and I’ve felt happy as well for positive things that might occur. I’ve wondered if we would all be able to get through this whole ordeal and for many days felt the situation was a real ordeal. I have not handled things well in many cases and I know this. There have been times that I spoke my complete mind about the situation and there are times that I should have said more but did not. This is a stressful time for every member of the family. Again, I don’t think it can be helped. The unknown is what is of concern and during all of it, the load is heavy.

Our family has been strong over all of our years. We have loved one another, been patient and kind and have worked as a team on so many levels. Our parents taught us real love in living out the Christian faith and we’ve all experienced this growing up. While this has been difficult on each of us trying to get through the “how to” times of this dreaded disease, we have made it almost to the end and though it has been difficult, we will rally together. It’s what we do as a family.

What I’ve learned throughout this journey is that I’m not as strong as I thought I was and that only through prayer and determination could I move forward. God is needed at every stage of this type of event. We cannot do it on our own. We’re just not strong enough but through perseverance and faith, we can meet the needs of our loved ones and gain whatever strength is needed for ourselves that day.

Josie