retireddaze

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It’s the day after Christmas. What I am still dealing with are the immense changes in my life. For the first time in over fifty-two years this was a Christmas without my wife. I saw her on Christmas Eve and Christmas Day, but my wife is really gone. She kind of knows that I’m her husband, but doesn’t know my name. When I asked her how many children we had she said “Forty Eight “. I laughed and told her I didn’t think we were that busy. She became tearful and told me that all the answers are locked up in her head and she just can’t reach them. She continues to want to leave memory care and come home. I continue to feel guilty but I know that she is where she needs to be and I really could not provide the care she needs

The whole Christmas thing was making it worse. I don’t think she really knew it was Christmas despite the decorations and the efforts of the Memory Care Staff to celebrate it with the residents. It was hard on me just to see her and see how much she has lost.

I spent time with both my sons and their families. Seeing the grandchildren’s joy with their toys and gifts was helpful, but eventually I had to come home to this very empty dry house. I was one of those guys who put up lots of decorations and outside lights and even reindeer on the lawn. My wife would always worry when I got out the ladder to decorate the roof. Even when we moved into this townhouse I would make an effort to decorate outside. We have two Christmas trees and boxes of ornaments and lights to put on them.

I didn’t put anything up this year. It just didn’t feel right without her. I think that the whole “without her” is dominating my life right now. I’ve talked to other men and women whose spouses have Alzheimer’s and it is the same story. It is losing a little bit of them each day. I keep telling myself to man up and accept this situation.

I have difficult decisions to make. I wanted to get thru Christmas before I started clearing up most of her possessions, books, and clothing. Our bedroom is still packed with her things. It is no wonder after fifty plus years of marriage. The question I keep coming back to is after I do let go, what is next?

Right now I don’t sleep in the bedroom. It doesn’t feel right. I also don’t watch TV aside from the news. When I do watch it, I stream it on the computers. We have a nice entertainment center with stereo and large TV. We both enjoyed it. She liked TV more than I did but over the last year she would watch maybe half of a TV show and then want to go up to bed. She wouldn’t really remember anything she saw. I don’t like to sit there by myself so I have just stopped going down there.

I know this is a process and I don’t want to continue to sound like “Poor Me”, but the process is still very mysterious. I want to know what’s next and when will this end. When I go to the monthly support group I hear much of the same story. This process is very unclear. The Kubler Ross stages of grief are helpful, but there is an end to it. At least there used to be. Now the stages keep revolving until you get to acceptance, but then you can start all over again. The difference here is that she is still alive and sometimes I see her shining thru before she falls back again. I wonder if she dies if that will at least start an end to this. Then I begin thinking what if I die first? Would she even know if I was gone? Will my sons be able to manage this? Would anyone come to visit her regularly?

These are the thoughts that go round and round in my head. I think I am avoiding making some very practical decisions about my own life. Do I want to keep living in this large townhouse by myself? If not where would I go? Right now I am going to pack up some of her books and donate them to the Library here in town. I am also going to drop off some things at Good Will. At least this is a start.

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What is hard to accept is the uncertainty of life right now. Good days, bad days cant be predicted. What is hard is accepting that our current situation is really not workable. In the last three months I have seen real changes in my wife’s behavior. Her neurologist said that this is normal for the disease and everyone progresses differently. What is hard for me is the increased irritability and loss of function in everyday living – like getting dressed, showering etc.

On a good day I think we could keep doing this and just adjust to the minor changes. On a bad day I start to realize that I cant do this anymore. My temper gets short. I raise my voice. I feel guilty afterwards. I also have to accept that this townhouse is not a long-term solution. The neurologist said that as plaque builds up in the brain it interferes with the brains ability to communicate with external limbs. Walking becomes difficult. Stairs become a real obstacle. Right now she has to hold my hand whenever we go out because she feels so unsteady.

All of this has gotten me thinking of our life together. We really have not been apart for a total of three to four weeks during the course of our marriage. Either I would go to a workshop or she would go on a business trip. We have had a good life. We raised two sons we are very proud of .We have seen them get married to two lovely girls and have four grandchildren we love dearly.

We have traveled and gone on vacations to Europe and other places. We have had a good life . —–that doesn’t change the fact that this is very unfair.

She doesn’t deserve this. She is one of the brightest, most organized people I have ever met. Now that is gone. I began taking her to an “Adult Day Care” two days per week in July. She doesn’t know why she is going, but she smiles more there than she does at home. The place is maybe 10-15 minutes from our home. On the way there every time she will ask 2-3 times, “Where are we going ?”.

One of my main supports thru this has been my sister. She has a friend who went thru this with her husband. We were trying to have breakfast with them on a regular basis. The last time we did it in July She saw how much the disease had progressed. I told her that the thought of her being in a Memory Care was almost too much. She said that she thought that was the best place. She and my brother in law came out when Marilyn was in day care. They helped clean out her closet and took two bags of clothes to my son’s house. When Marilyn got home she never noticed anything was missing

What finally made my decision was her thinking I’m trying to hurt her. I have never lifted my hand toward her. She is hiding her jewelry thinking I want to steal it. Then she forgets where it is and we spend hours trying to find it. Last week while I was upstairs on a call she ran to the front door and began yelling “Help, Help me !!”. She wouldn’t tell me why she did this . We went to Walmart for some groceries and she began doing this in the store. I called the Cary Police Dept about this and told them of my wife’s Alzheimer Dementia. They had me fill out a form in case she gets out of the house.

I finally accepted the fact that she needed more care than I could provide. We had already put a deposit down on an independent living apartment in Algonquin. I cancelled that and put deposits down on two facilities for Memory Care. After about three weeks one called and said there was an opening beginning Nov 1. After talking to my sons, we accepted that. I wanted to wait until after Thanksgiving but my sons thought we she should go sooner. We set a date of November 15. I took her to day care and my sons came over with one of their father-in-laws and moved her dresser and end table into her room at the facility. I picked her up and took her there for “lunch with our sons”. After the lunch we went to her new room. She was very upset. We left her there with the staff at the facility.

The next two weeks are still a blur. I cant let go. I go visit her there every day. She cries and wants to come home, but then she will do or say something that makes me realize that this was the right decision for her.

I don’t think I will ever accept that it was the right decision for me.

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This initially started off as a blog about transition into retirement and continuing to observe the world thru my liberal social work perspective. It has now changed into gradual acceptance of mortality and the stages that occur as we age. One of the really difficult things for me to face is my continuing denial. It is much more than a river in Egypt. In March of this year I finally had to accept that I needed eye surgery for Cataracts. I had been putting this off for at least five years and my denial continued until I had to accept the truth. My vision in one eye was blurry at best and increasing power on my reading glasses did not seem like a long-term solution.
The eye surgeon whom I consulted had recommended this for a long time and whenever I questioned him about this he would get irritated. I continued to think that I knew best and was proud of the fact that I had never had surgery. I think what helped make my decision was having to face the reality of our current situation. My wife cannot drive any more and we decided to sell her car. Now we only have one driver and one car. If my vision continued to worsen we would have no real transportation.
The surgery went well and I have been pleasantly surprised with the result. I still need reading glasses, but my vision is much better overall. I complimented the surgeon, but I know I am not one of his favorite patients. I continue to wonder why I put it off as long as I did.
Denial affects almost every area of my life. My vision was only one aspect. I continue to have difficulty accepting getting old. I know this is not the most surprising thing in my demographic, but sometimes I think I am still in my 30s and 40s until I experience the consequences of doing too much.
I think denial really affected me the most in my marriage. My wife has been diagnosed with Alzheimer’s Dementia. I would make excuses for her for years for her memory loss and losing things. I really had to accept it two years ago. We went on a Mediterranean Cruise for our 50th wedding anniversary. We were both very excited about it, but she had a difficult time keeping up on the cruise with the other passengers and it was evident that there was something wrong. When we returned I set an appointment with her primary care MD. Her physician thought she had had a stroke and ordered and MRI and a PET Scan. The Scans indicated a small silent stroke and indicated possibility of Alzheimer’s. We then went to a neurologist who confirmed this. The one thing the neurologist said that still bothers me is that there is no cure and the goal of treatment is to slow the progress.
Over the last two years the progress has accelerated. She has trouble with memory on a daily basis, has trouble dressing and right now cannot be left alone. I continued to think we could manage this but our sons both said our current living situation was not manageable. We began to explore senior living facilities. These facilities have three levels. Independent living which is basically apartment living with meals included. Assisted living which provides additional help such as help with medication management, dressing, showering etc. Memory care which is basically for individuals who can not be left alone and need more intensive care . I initially though we could live in our home here and then move into Independent Living. Over the last nine months that has changed. Her disease has progressed. Assisted Living does not provide enough protection or safety for more advanced Dementia. We are now on a wait list for a Memory Care placement. This is still incredibly difficult to accept. This hasn’t happened yet, but it will and I know it will break my heart. I also know that this is the care she will need. Hopefully I can stay strong enough to carry this thru .

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I recently heard a talk about prolonged stages of grief for caretakers of Dementia. Every day you see a loved one lose a little bit and every day another part of you slips away.  Right now I can recite Kubler-Ross by heart –Denial, Bargaining, Anger, Depression, Acceptance. I foolishly thought this would be like dealing with death of my parents or sister. It is not.

I think what stops this is the daily contact and gradual deterioration. I keep expecting it to stabilize or even get better and it doesn’t. I initially thought this was just a part of aging like forgetting words or where you placed something. I would make excuses or jokes about it. Physical problems like walking slower I thought just needed encouragement to move quicker.  I would listen to my sons about her problems maneuvering on stairs and danger of falling. They began suggesting a move into senior centers in December/January. We even visited one with them and had lunch there. I kept saying we could stay in our home, and we could manage this. Over the last nine months I have had to change. I agreed to visit other senior centers. I would always find excuses like cost or loss of freedom or problems with moving from townhouse to a one- or two-bedroom apartment. We finally put a deposit on a nice apartment with independent living. We even went out and began measuring what to bring.

Then reality struck again. My wife began having increasing problems with memory and physical activities. Her primary care physician now classified her as severe and said independent living, or assisted living would not be enough. We had our deposit returned and she is now on a wait list for a memory care placement.

If I have time, I begin to think about myself. I think I worked thru Denial and Bargaining, but right now I am on the elevator between Depression and Anger. I get really irritated at something my wife does. I raise my voice and then feel overwhelming Depression until the Anger surfaces again. I will wake up at night and feel guilty about placing her in memory care.  Friends and family all want to know how I am doing. I always say fine, and that my focus is my wife.

What is really hard to accept is that the girl I married is gone .She doesn’t remember much of the past.  I will bring up something and it’s obvious she doesn’t recall it. She has trouble remembering her sons names and really can’t remember her grandchildren. She recognizes them if when sees them, but still has trouble with their names. I know this is the process of the disease and I know it will continue to get worse. What is hard is trying to remain positive with her. She doesn’t smile much any more. I used to say that she made me laugh at least once every day. Now she doesn’t laugh at anything I say and prefers to sleep rather than talk to me.

I keep remembering that this is the girl I met fifty-four years ago and have been married to for fifty-two years. We had a good life and went thru raising two sons, watching loved ones die, having grandchildren, going on wonderful vacations and all of the other events of a long marriage. We have both had reasonably good health and no real external crises in our lives. I know I need to keep focusing on positives, but the reality is that I really wasn’t prepared for this. I don’t know if anyone could be.

I think Kubler Ross’s stage of Acceptance is just a myth for me right now. This may be due to our current life being so fluid and unpredictable. I know that after my parents death the grief passed after awhile. My grandmother from Ireland never let the death of her husband pass. She wanted to go to the cemetery weekly and would say two rosaries a day for him. This might have been because he died suddenly and she didn’t have a chance to say goodbye. I keep thinking that I am saying goodbye every day and then get up and start another day. I treasure the good days but they are getting harder to find. Maybe today will be different.

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The funny thing about aging is you often don’t feel old. Senior citizens are those other guys. Then there will be days when you realize there are now things you can no longer do. Reality is a bitch sometimes. As a professional therapist a large part of my job was to take care of people and be there for the crises of their lives. Now I am having difficulty accepting that those crises can happen to me.

My sons are worried about their mother and me. My wife now does have serious health concerns that need to be monitored. Both of our sons accompanied us to a tour of a senior living facility this past week. The facility was probably the top one in the area. It was absolutely spotless and was newer construction. The facility offered three levels of care: 1) Independent Living, 2) Assisted Living, 3) Memory Care. Our tour included all three levels.

They have both one and two bedroom apartments. The one bedroom is very small. The two-bedroom apartment is much larger, but it is still an apartment. Walking thru them was difficult. We have been in our own homes for over 50 years. During that time we have accumulated memories along with the many possessions we have. The thought of giving up those things and the independence of our lifestyle is difficult to accept. As I write this California is going thru their terrible wildfires. There are people being interviewed who have lost everything. Moving into a senior center doesn’t compare to that, but it still involves major life changes. The last time we lived in an apartment we were just married. You forget how small an apartment is and the lack of personal space available.

The other levels of care (Assisted Living, Memory Care) also have apartments but with much more structure and monitoring by facility staff. It appeared very professional with both caretakers and nursing staff. I was impressed with the facility but still depressed with the concept of having to make a decision about living there.

I asked our guide about activities and she told us there was a lot available. They have a mini gym, Movie Theater, various rooms for many other activities. She continued tell us how pleased the residents were there. We ate lunch there in their dining room and saw some of the other residents. I went up to a family member who was eating with her mother and asked how she liked the facility. She said that she was quite pleased with it and her mother, who I also met, was happy there. The daughter said she had visited many facilities and this was by far the best.

I think our sons would really like us to consider selling our home and moving into a place like that. They have realistic concerns that if either one of us has a catastrophic health crisis, they would be left to resolve decisions about our home, possessions and lifestyle. I think that is part of the aging dilemma that is not talked about much. This not only affects us, but also our family members who have their own lives and responsibilities.

When I was growing up my grandmother lived with us until she had a stroke and died in a nursing home hospital. It was common back then in the 1950s-1960s to take in older relatives. My grandmother cooked , cleaned , and took care of us and that made it possible for both of my parents to work. Today that doesn’t happen very often. The demands of the 21^st century make that type of arrangement very difficult if not impossible.

I don’t think there were many, if any, senior living facilities back then. There were nursing homes where families would place relatives who could no longer take care of themselves. They would live there until they died.

Now facilities like the one we visited exist. They offer more options for healthy seniors who still want some independence. However it still seems very lonely. We visited on a Sunday. We saw many residents, but very few family members. I wonder if families begin to think that senior living is the answer. It’s almost like parking your car in a covered garage and that solves a difficult problem. I know our sons are worried about us isolating ourselves since we moved here. However we still have each other and maintain contact with a few friends. We moved from our home of over 37 years to be closer to our sons and their families. We go to family activities with our grandchildren but come back to our own home. We could still visit our family and grandchildren, but would then come back to a place that is not a home. It is still possible, but we still have some time before we are parked.