The Decision

Dad has now been with us just a little less than 3 years. To put that in perspective, that has been the graduation from high school of one child, college of 2 children and myself (my masters), the birth of 2 grandchildren, a third was born a week before he came, the marriage of two children, the changing of my primary employment, the death of our long time family dog (15 years) and the arrival of our newest family member (now a year and a half ago - Molly the dog). There has not been a shortage of things going on in our lives. Upheaval can be best used to describe our lives over the past 34 months. During these normally stressful events we have made adjustments to Dad's disease as he has progressed from late stage 4 to mid-stage 6 Alzheimer's.

The first adjustment was to having him here. The second was to him not wanting to be here. He was always, and I don't mean usually, very nasty to me in particular, tantrums, swearing, arguing, any means of expressing his disapproval of the new situation. I could wake up in the morning with the clear expectation of more verbal abuse. There was the adjustment to me being the parent of a not so cooperative 81 year old man and making decisions for which there had been no progressive preparation. We had to find him activities outside our home for both his and our survival. We had to fight with him to go to these activities until they became a habit, only to have that habit broken as we took some respite and have to start all over again.

Adjustments, adjustments, adjustments. I could have been a chiropractor. At each skill level change we made adjustments. As each mental acuity level changed we had to make adjustments. He cannot adjust. The care giver adjusts. As he began to communicate differently we adjusted to keep communication open. As his perceptions abruptly changed, we adjusted to keep within the scope of "his reality". For a while it seemed to be the "reality du jour". Any expectations of him changed into adjustments for us. All the while our own life adjusted around us in a myriad of swirling changes demanding our attention. At the end of six months we were exhausted. At the end of three years - well, I can't even describe how we are.

As recorded earlier Dad's health changed on my birthday. That is now a month and a half ago and he still daily says, "I don't feel well." He has been to the doctor, the hospital, seen the visiting nurse multiple times and in every case been declared "Healthy and fine." Still the mantra is, "I don't feel well." "I don't feel well," can mean, "I am not going to church today", "I am not going to adult day care today," or "I am not going to do anything at all but sit here in my chair and die." My lovely bride has been pushed past her capacity to care for him for the past 3 years and now the very limited activities which she is allowed during his time at adult day care are jeopardized by, "I don't feel well." She never, ever, has complained. She hasn't complained now. But the extra stress is visible. The time has come. The decision has been made. We have been adjusted to the limit. Another adjustment would cause breakage.

Tomorrow we have our final visit to a nursing home. We have examined homes for the past 3 years knowing that the final time would come. We had no idea how we would know when that time had come, but we knew it eventually would. Last week I said to my bride, "The time has come." She smiled, "I thought that a week ago." She had never said a word. There was no one final major issue. There was no line in the sand that was crossed. All of our wondering how we would know was simply summed up in the one sentence. "I know it is time." We have no guilt. We know it is time. The time may take 2 more months. Now that we know, we have to wait for an opening. But, the peace of knowing will be an enablement for the duration. We can say without any hesitation any longer that he will be better off in a home. He will have new people to talk to, to share his limited repertoire of stories with. He will have 24 hour nursing care when he doesn't feel well. (He has always been a terrible hypochondriac - this should be great.) We finally see someone else being able to provide his care and do it better than we can. It will be a new sunshine in his descent. And, it will be some sunshine for us before we collapse under the weight of his descent. There is a time for every purpose under heaven. It is time.

Weathering the Storms

Wow! It's been over a month. That is not exactly because nothing has been happening. I lead this exciting secret double life. Caregiver by evening and doubly employed during the day. If it weren't for my bride, care for Dad would be scarce. Kudos to her for all her hard labor. She is the daily sunshine in his descent. A lot to do in both jobs this summer plus care giving is one of the storms we have had. That is largely our storm, though, and not his.

This summer has seen a great decline in Dad. People at church have noticed it. The visiting nurse has noticed it. Family members have noticed it. Other friends have noticed it. Oh, he does have those amazing days when he is seemingly "all there", but they are like a streak of lightning in a dark night. Lots of momentary dazzle and then greater darkness than before.

The decline here is the mental decline, the lack of ability to perceive his surroundings, communicate, care about his appearance, interact meaningfully, and all that goes with mental decline. What remains is the persistence about getting married to his girl friend, his deep memories of childhood and family, his delight in seeing the great grandchildren come over. He does really enjoy that.

There has been another decline. This has been physical. On my birthday in mid-July he complained of feeling "not well". That is a little vague, but he is a little vague. Sometimes he felt a little dizzy. Others a "bit off in his mind." (I couldn't have agreed with him more!) Then he would feel great again. The spells came and went so fast that I had no clue what to do. Both my brother and sister were here for the day and were equally baffled about a solution. The next day he wouldn't go to church. Kudos here again for my bride. She took him to the emergency room while I took care of responsibilities at church. The emergency room doctor declared him fine, though Dad was outraged that the "_________ dumb doctor couldn't find out why I am sick." He was up and down in his feelings for several days. We took him to the doctor and had the visiting nurse see him twice that week. It is his blood pressure. It is perfectly normal after having been marginally high for years. He feels light headed because he is healthy. Go figure. That was a rather big storm because he couldn't communicate exactly the problem, could not understand at all the doctors' comments, could not remember having seen the doctor and could not accept what we told him about how he was OK. He still feels a little off and we don't know if it is legit or not. Is it serious. Has something else come up in his body. The physical questions are starting to eclipse the mental ones.

Upshot? Recommendations are now coming in from friends, church members (who, of course, are also friends), family and health care providers that it is time to put him in a home. Wow! This is a storm of a different kind. Are they all right? Are we being stubborn in keeping him here? Do we have a better understanding than everyone else? When he first came some people who supervise my work were adamant that I should put him in a home then. They were afraid and have remained afraid that my work would suffer from fulfilling a true family obligation. Their attitude rather inured me from listening to advice from people with other agendas. Then it inured me from listening to advice from people critical to having him in our home period. After a time, perhaps, I have come to the place where I have lost the ability to take another's legitimate perspective on what is best for both us and him. I can hear my supervisors' haughty voices saying, "See we told you this two and a half years ago." I can also hear the comments of others, "Oh, now that it is getting difficult you want to cut and run!! Humph!!" Caught in the middle. Well, I am a tweener. It started as being between the generation still living at home with us (now all married and gone) and having an older generation move in. Now it seems to be between a rock and a hard place in making critical decisions. That is the storm. Dad is oblivious to it as he is now oblivious to most things. It is by all accounts, my call. The weather seems a little rocky with more storms ahead. Stay tuned.