My mother died last Friday. She was 82 years old. She has had Alzeimer for several years and has been in a care home since June 2008. She had asthma for many years. She had been having increasing difficulty breathing and with that came a diagnosis of late stage chronic obstructive pulmonary disease. I visited Winnipeg in October last year and at the end of January this year. Her death was sudden, apparently due to a cardiac episode. The last few years were confusion, distress and illness, the end of her life was inevitable, painless and not too soon.
My sisters and brothers in Winnipeg have coped with the issues of my mother’s terminal illness and my father’s decline and psychological collapse with much hard work and many tears. Dad is in the care home. In the last couple of months before mother died, he was failing in self care and unable to change the course of mother’s illness. He was getting disconnected with reality, although his love and affection never wavered. He seems to have become more lucid, but much sadder after the funeral today.
He has mentioned some old stories that I had never heard before, and would not have understood when I had less lines on my face. His mother had visited from Holland in the early or mid 1960’s. My father had not gone back to Holland when his father had died, and he had tried never to look back on his decision to move to Canada. His mother had told him, he remembered, that his mother had reservations about Rosa. She was older than him and “bossy” which was probably a way of saying what we might call needy, as she was always emotionally expressive, and defensive of her self-regard. He said that his mother had tried to say that she was surprised at how well Rosa was doing as a wife and mother, but he had found the remark hurtful.
My brother in law Joe accepted the task of delivering a eulogy at the funeral. He spoke well, emphasizing on the positive elements of her last few years. She became a happier person, more “in the moment” more content to take and give a smile and thumbs up and to wish anyone well with “keep up the good fight”. He found the right picture and captured her strength as a mother.
In December last year I agreed to travel to Winnipeg to accompany my dad to the hospital for his surgery for hernia. He had the operation in January. It disrupted his routine of visiting mother in the nursing home for a few days, but he was back at it. He realized that his needs to visit and be with her had been putting a strain on his family – specifically my sisters, who had been picking him or taking him home. He agreed to apply to be placed in a nursing home – on strict condition that it would be the same home as mother. He was surprised when his application was approved quickly. He had been underestimating his frailties.
He moved when a room became available. He is on the same floor in a different wing. He visits mother and tries to anticipate her needs and wants, and to provide care that the staff can’t provide. This tires him out, because his ideas of what she needs and deserves are not the same as everyone else’s, and he reacts to her smallest gestures. As her behavior is impulsive, this can be frustrating for him. He says he is happy. He is busy with his efforts to help mother. He turned 80 in June. I visited at the end of June.
My parents are getting old, and old age is not pretty.
My mother has had Alzheimer disease or another form of progressive denile dementia for about 5 or 6 years, although it took some time for her physician to learn all the symptoms – my mother thought that it was in her interest to minimize her symptoms. She has been a mistress of denial, and my father was a co-dependent in her efforts to resist interventions.
I visited Winnipeg from October 3 to October 12. My father was tired, my sisters were concerned. Her needs were beyond my father’s capability and have been for some time. My father has tried to enjoy the good moments, and has been concerned that if her demented behavior was admitted, she would have to be monitored closely and sedated and restrained. He has kept home care out and aided her in her efforts to fool the people who might arrange for care – under conditions that he does not think are good enough. His judgments have been loving, but risky.
The week after I returned, my sisters realized that her complaints about some bowel trouble were serious and had her admitted to hospital. She had developed a rectal prolapse. The prolapse itself is apparently inoperable. Over the first few days of November, my father thought another doctor thought that there might be partial blockage of the lower large intestine, which has been causing the straining that causes the prolapse. This presented the possibility of surgery for the blockage and some relief for the prolapse. The idea that she might have surgery has energized my father. He hopes she might come home. He accepted the idea that they might accept some home care though. [Updated – Nov. 10/07. My father misunderstood the medical information. The hospital had ordered a colonoscopy to assess the damage, not to look for blockages. There was no prospect of any relief of the prolapse].
My mother also had pneumonia when she went to hospital. She has had asthma for decades and she has become accustomed to using an inhaler when she is short of breath. She gets short of breath when she is anxious, then used the puffer. This accelerates her heart, which make her anxious, which lead to more use of the puffer – especially since she doesn’t remember she has been using it or realize that she is overdosing. The hospital has tried to restrict her use of the puffer. My father apparently gives it to her when the nurses are not around to relieve her distress.
The prolapse cannot be managed by an Alzheimer patient who doesn’t remember why she is in pain. She has been in hospital, and can’t go home again. She is calm most of the time, but becomes agitated and wants to go home. My father is full of anxiety. Over the last few weeks he has been occupied with worrying about my mother. My sisters and sister in law have been working hard to arrange transportation to the hospital and get meals delivered to him at the hospital, and to take care of him during this stage.
My sisters and brothers are doing their best to help him make the decisions that will let him know that she is getting care, and to let go of the idea that he can protect her independence. We can hope for decency, dignity and respect.
[Updated Sat. Nov. 10/07. On Friday (Nov. 9), my father agreed to sign the forms to admit my mother to a nursing home and to get some home care services for himself, to let him stay at home before his own health deteriorates further].
Dad and I attended the Alzheimer Society workshop, called Living with Alzheimer Disease, on September 24 and Saturday October 1. It was scheduled for 10 hours over the two days, divided into 6 presentations or workshops. Dad and I went to all three sessions the first day and one session the second day. I had coffee with him and discussed the workshops. We got package of printed material which included printed versions of the Powerpoint slides that some of the presenters used, and some other literature. I picked up other fact sheets, booklets and pamphlets. In the presentation and literature the person with the illness is generally identified as the person or individual, and sometimes as the patient. For social services, the person with the illness is the client.
My mother was diagnosed with Alzheimer Disease just before Christmas last year. She has been showing short-term memory loss, losing track of what she is doing and acting erratically for the last two to four years. My father has been trying to manage on his own and has been resisting involving the provincial Home Care program. He says Mom made him promise not to “lock her” up in a nursing home, and he has been respecting her wishes. In the last few months she has started to wander, and has become increasingly paranoid and agitated. He has also mentioned a couple of episodes when she became angry and hit him. He has been keeping information to himself, and has only recently started to share his concerns.
My sister Teresa asked me to help to convince him to attend a care planning workshop with the Alzheimer Society (AS), and I went with him. This was, obviously, an intervention. The work and the worry have been wearing him down, and her symptoms have been getting worse. He can’t manage the disease. He can’t reason with Mom – he never could. He doesn’t like the message that she is ill to the point of being crazy. She is losing control. He needs someone independent to help him see that it isn’t personal. He is going to live through some bad days, but may be able to minimize them and still have some good days.
N. is 18 today, and it has been more than two years since he ran away. I stopped writing about him in February. I stopped bargaining with him. I stopped responding to his demands and requests. I stopped trying to give him advice.
Claire turned 20 today. I continue to be amazed by her intellect and her talent, impressed by her increasing maturity and self-reliance. She has witnessed and tolerated my ups and downs for the last year. I love her dearly.
[Originally posted in Rise Again].
I haven’t posted in Rise Again since August. I used to post the news about n. here, but in September 2004 I started to post the news about n. in my public blog, A Sea of Flowers. If n. stays addicted, he will probably not care about my having written about him. If he gets better, he may not want to be reminded about his story, but it won’t hurt him.
I am frustrated with n’s situation. He has been able to bend so many situations to his advantage, and he seems to keep avoiding the consequences of his actions. I have helped to guard him against some of them myself and I have been reading some of my old posts with dismay. I have seen the problem and I have seen how useless I have been at helping n., and how has manipulated me, again and again, but I keep trying to help, and I keep repeating my mistakes.
All the other players in the system keep putting the responsibility for getting n. into drug treatment on him. I keep hearing that no treatment program will have him until he is “ready” but I wonder if that isn’t an excuse to avoid having to work with him. No one seems to want to take hold of n. and work with him. I also keep hearing that the treatment resources for amphetamine addiction are simply not there. I would like to just get him off the street, get him away from the drug and get him working on his own recovery. I can’t do it because I can’t hold him or lock him up, and because he doesn’t keep his promises when he lives with me.
Over the last two weeks my relationship with n. has been reduced to picking him up, driving him around, buying him a few meals, and buying tobacco, groceries and few other articles to make his life at the Salvation Army a little easier. He has not been able to give up drugs and he is still avoiding drug treatment. He continues to ask me for resources while lying about his addiction and his plans to deal with it. Today (February 8) I told n. that I was not going to keep meeting him and buying things for him while he is avoiding drug treatment. I finished a conversation that we have been having over the last few weeks.
Getting back to n., and his latest stay in the hospital, here’s the rest of the story of the days between the start of his breakdown and his discharge from the psychiatric unit.