The big question (part 4)
By Mike on Thursday 1 February 2007, 02:25 - Reference - Permalink
Well, I took everything he said very seriously. In fact, many of the comments that have been left over the last few days have also struck very resonant notes. It has been so far a very worthwhile exercise trying to think aloud in public.Mike,
I have been watching you blog for the past few days but wanted to chew things over before replying.
Looking at your four goals, it occurs to me that goal two is probably the key.
It is easy for me to say that the main criterion for deciding the timing of placing Mum and Dad in a home has to be the well being of you, Rachel and Greg, because I won’t have to physically move them. I will not have to sell the house and contents, take Mum and Dad to the home, leave them there and then carry the departure image with me. I will not have to live with the knowledge that I physically placed my parents in a home. I will not have to endure the inevitable pleas to take them away from the ‘hateful place’ and back to a home which no longer exists. I,therefore, see this decision as being a balance between the stress which you suffer as a result of their remaining at home (together with any potential guilt which may arise if they injure themselves) and the feelings which may well arise if they go into an institution.
Clearly, the fact of having this discussion means that the wellbeing of Mum and Dad is an issue which needs to be considered but I think that the context given above is important, not to say crucial. Having said this, I am unsure how one measures ‘wellbeing’ for AD sufferers unless it is the absence of stress as the disease progresses. In this situation maybe death is the ultimate state of low stress and thus of wellbeing!
When Janet and I were leaving the UK to live in Tokyo I took Rebecca, then aged 15, to stay with friends as a paying guest for about 12 months. I shall never forget how lost she looked sitting in her room, surrounded by her belongings and among people whom she knew but who, in this context, were strangers. I still feel guilty after 18 years and I have had the advantage of being able to talk to Rebecca, subsequently, and express my regret.
Any distress being suffered by Mum and Dad will be over in a few years, but any guilt which you, Rachel or Greg carry may go on for much longer.
I was interested to read your analysis of your feelings for Mum and Dad as well as your more general musing on the nature of love. It was as though I was listening to my own thoughts.
Regards
Derek
Comments
Mike - thank you so much for sharing your journey. I have been reading your blog and felt as though you were writing, in part, about our experience. Both our parents were diagnosed with dementia early in 2006.
They had been fantastic at hiding their problems and my Dad in particular, was seen as the main carer. It turns out, he is worse than my mother but that only became clear once all responsibilities had been removed.
The decision to move them to a home hung over us like a death sentence for months. We tried care workers, pill givers, you name it, we arranged it for them. It was not going well though and the crisis phone calls came fast and furious, often first thing in the morning.
In the end the decision was made for us. A doctor had once said to us that a medical event will often dictate the decision. Seems he was right. Dad agreed to go to the home with Mum "for a while" as he knew he could no longer care for her. I think she thought she was going there because of him. In any case, they have been in a nursing home for 6 months now and are thriving.
It is a small home with very caring staff, many of whom are immigrant workers. There is a real sense of family atmosphere and family members are welcomed warmly, at any time.
Dad lives a busy life, involving himself in projects, just as he used to; the difference is that now his projects are in his mind but, since he does not know that, he is happy. Mum is up and down but has stated, several times, that she loves it there and would hate to leave. I think that not having responsibilities and having others around, day or night, to turn to, has gone a long way in helping them adjust.
I don't feel guilty really. I have felt it at times but the way I see it is this: we have done the best we knew how to for 'our' parents. We are still caring daughters and are very protective of them.
It is like having young children again. A part of helping young children to grow up strong and independent is to let them have their own space, allow them to test their limits. In a way, parents with dementia are the same. If we locked them in our house with a carer, their life could be monotonous and boring. In the home, they have the banter of the staff, they have parties and celebrations and outings, they can chat to others and socialise when they want to. I think it provides a fuller and more well balanced world for them, rather than the loneliness of lodging in a child's home, with one stranger to keep them company all day long.
Guilt, if you allow it to, will eat you up. It is created by your own mind and can only hurt you. It can benefit no-one. Everyone's opinion is valuable in your research gathering phase but ultimately the decision has to be made based on what's best for 'your' parents. The dynamics of each family are so very different and there can be no one right or wrong way.
I hope that "time" will help you out, just as it did for us.
Stay strong.
Sarah
Thank you, Derek. I feel as though I am reading what each of my three sisters would say, if they stopped long enough to contact me and say it.