The big question
By Mike on Sunday 28 January 2007, 13:28 - Reference - Permalink
Do we leave mum and dad at home or move them into care?
It is clearly an understatement to say that this is a difficult decision, as most families wrangle with the issue for months, perhaps years, and often continue with self-recrimination and doubts for some time after the decision has been made. Like a lot of life's big decisions - should I move overseas, should I get married, or divorced, should we have children - it has long-term consequences and can be irreversible. However, the scale of the consequences is not what makes this a difficult decision, it is the lack of clarity that does that.
Just to make sure I have made this distinction clearly, here is a contrasting example, a decision that has serious lifelong consequences, yet is clear and easy to make:
We can at least put some bounds around the current problem by noting that:
The problem is that, while there is still a decision to be made, there are no other certainties. Only two alternatives (each with a number of variants) yet both are essentially unknowns. It is almost like playing 'pick a box'.
We must also define our goals and decide which of them takes priority over the other. Again, this is not so easy. In the driving example above it simply went without saying that avoiding a car crash is a more important goal than having an enjoyable conversation. Yet, if this were not so, just for the sake of argument, the answer to the question might be different.
What are the alternatives?
Staying at home versus going into care.
What are we trying to establish?
When to make the move.
What are the goals?
The pros and cons of the two alternatives, under varying circumstances
Actually, now that I think about it, this is just another candidate for three-step structured problem solving:
I think I shall stop here now, just to give myself a few hours to accept that these really are the goals in order of priority, and to give the others time to chip in with their contributions too. I'll continue tomorrow...
It is clearly an understatement to say that this is a difficult decision, as most families wrangle with the issue for months, perhaps years, and often continue with self-recrimination and doubts for some time after the decision has been made. Like a lot of life's big decisions - should I move overseas, should I get married, or divorced, should we have children - it has long-term consequences and can be irreversible. However, the scale of the consequences is not what makes this a difficult decision, it is the lack of clarity that does that.
Just to make sure I have made this distinction clearly, here is a contrasting example, a decision that has serious lifelong consequences, yet is clear and easy to make:
Obvious answer, but only because the consequences are so clear, not because the costs of making the wrong decision are trivial - they are clearly not.I am driving with the whole family in the car. Do I concentrate on driving, or forget about it and just join in the conversation?
We can at least put some bounds around the current problem by noting that:
- Mum and dad will steadily get worse, never better.
- At some stage, 24-hour care and observation will be essential.
The problem is that, while there is still a decision to be made, there are no other certainties. Only two alternatives (each with a number of variants) yet both are essentially unknowns. It is almost like playing 'pick a box'.
We must also define our goals and decide which of them takes priority over the other. Again, this is not so easy. In the driving example above it simply went without saying that avoiding a car crash is a more important goal than having an enjoyable conversation. Yet, if this were not so, just for the sake of argument, the answer to the question might be different.
What are the alternatives?
Staying at home versus going into care.
What are we trying to establish?
When to make the move.
What are the goals?
- to keep mum and dad happy
- to keep the rest of us happy
- to keep mum and dad alert
- to keep mum and dad alive
The pros and cons of the two alternatives, under varying circumstances
Actually, now that I think about it, this is just another candidate for three-step structured problem solving:
- gather and analyse the information
- decide what to do
- implement the decision
I think I shall stop here now, just to give myself a few hours to accept that these really are the goals in order of priority, and to give the others time to chip in with their contributions too. I'll continue tomorrow...
Comments
Mike,
You appear to be such a rational, orderly thinker. You map things out - Step 1, 2 and 3. You are mechanically innovative, able to wire together web cams and mailboxes. I have so much admiration for you.
What breaks my heart every time I read your posts, is how much you love your mother and father. You may not see it, because you're so close, but your view of your parents, your description of their days, says more about you dealing with Alzheimer's than them. While they find it impossible to remember who they are, you find it impossible to forget.
Even when their behavior is infuriating, the never ending questions, the repetitive phone calls, what to outsiders is so obvious the spiral of dementia - you see them always as they were, your parents - your spirit-filled, bucket wielding mother and your father, the man who heroically fought in the war, and sneaks out to his day care after hours. These two characters, as you so vividly portray them, are dear and precious. Your mom and dad are truly blessed, from head to toe, to have you watching over them.
Thank you for sharing them with us.
Sincerely,
Patty
I am deeply invested in continuing to read the detail of how you make your decision, for obvious reasons, and grateful to you for continuing to publish this detail online. I sometimes wish all your siblings were recording, too...just so I could watch a family who seems to be operating with much less dysfunction than seems to be normal as you deal with an excruciating situation.
Thank you, Mike.
I'll add my thanks too. As Patty says, your parents are so vivid through your stories that I feel as if I carry them around in my head along with my own mother and father and my husband's parents.
Confronting this decision is when we really see how having TWO parents needing care complicates the situation exponentially. Each of them is on a separate glide-path. There's no way to know how long their paths will coincide, how long either of them will live, or what the needs of either of them will be along the way.
In my parents' case, if either of them had to leave home, the other would not be able to stay there alone. This would mean finding a place for both of them, even though their needs and abilities are very different. This in itself is a motivation to keep them at home as long as possible.
The only principle we have been able to come up with in making this decision is that the solution cannot depend on someone sacrificing their life's happiness. This doesn't give us any specific answers, but it helps in sorting out the option.
Mike,
"Sometimes you have to do what people need, not what they want." Six of us struggled mightily to decide how to deal with our mother. (One book that helped us was When Love Gets Tough: the Nursing Home Decision, by Doug Manning. His website is www.insightbooks.com. I'm not advertising for this guy; I just really found his book helpful.) Our mother has Parkinson's with a fair amount of dementia, and can only walk a few steps with assistance. After we had hired a cleaning lady and moved in a shower bench, lift chair, porta-potty, hospital bed, pill-organizer, and even special utensils for mealtime, we realized it was all an attempt to bring the nursing home to her. After many family meetings,we placed safety as the number one priority, and that made the decision much easier. I don't think making her happy would have been a reasonable goal for us. The transition was difficult for all concerned, but within days we knew we had done the right thing by placing her in a nursing home. Our mother is safe and warm and comfortable. Free from worry about her falling or becoming malnourished or sick, we can visit with her more freely. She has friends her own age and activities and exercise she can handle. She says she never wants to leave, and she feels safe there, and happy. Good luck to you in making this very difficult decision. Guided by love for your parents, whatever you choose will be right.
Anne
If I may comment on a comment, I think Anne makes an interesting point in saying "I don't think making her happy would have been a reasonable goal for us."
I wondered about "to keep mum and dad happy" as being at the top of your list of priorities. I don't think I could say that, even at the best, either one of my parents is ever actually happy any more. They are often contented, and my mother has enough of her mind left to be mightily thankful for their times of contentment. My father doesn't have enough self-consciousness even for that. In expecting to keep them happy, you may be setting up an impossible goal.