The big question (part 2)
By M on Monday 29 January 2007, 21:38 - Reference - Permalink
One thing I quickly realised is that the goals I drew up yesterday are
complexly inter-related. It does not work that if we cannot keep mum and dad
happy then, and only then, do we try to look after our own happiness. We must
try to look after both - all four of the goals, actually - at the same
time.
And there were some salutary comments on that too: I take the point that contentment may be all we can aim for for mum and dad.
What I need to add to yesterday's thinking are the circumstances under which the move to care would be necessary beyond question. I think the various scenarios are as follows:
Staying at home
Moving into care
There is something very unsatisfactory about the lists above - but I cannot quite put my finger on it. It may be that I'd hoped that this would aid the decision, but it seems to only re-echo the uncertainty of yesterday. I hope Greg and Rachel, and any others who read this, may be able to suggest modifications to these lists.
We've discovered that the social services are not quite as advertised, and I've learnt from reading other people's blogs that nursing homes are also not as advertised. Their brochures and spiels present their best-case scenarios. I am trying to mentally prepare myself for experiences like those I've read about: finding a parent lying in a wet bed, noticing wounds on their arm, discovering them sitting, apparently catatonic, beside a noisy haranguing other demented person.
Obviously there are no answers here. I'll just have to come back to this again later.
And there were some salutary comments on that too: I take the point that contentment may be all we can aim for for mum and dad.
What I need to add to yesterday's thinking are the circumstances under which the move to care would be necessary beyond question. I think the various scenarios are as follows:
- mum or dad turn into a wanderer
- mum or dad lose control of their bowels
- mum or dad lose all ability to feed themselves
- mum or dad lose mobility
- dad goes blind
- mum's violence persists
Staying at home
|
Pros |
Cons |
|
|
Moving into care
|
Pros |
Cons |
|
|
There is something very unsatisfactory about the lists above - but I cannot quite put my finger on it. It may be that I'd hoped that this would aid the decision, but it seems to only re-echo the uncertainty of yesterday. I hope Greg and Rachel, and any others who read this, may be able to suggest modifications to these lists.
We've discovered that the social services are not quite as advertised, and I've learnt from reading other people's blogs that nursing homes are also not as advertised. Their brochures and spiels present their best-case scenarios. I am trying to mentally prepare myself for experiences like those I've read about: finding a parent lying in a wet bed, noticing wounds on their arm, discovering them sitting, apparently catatonic, beside a noisy haranguing other demented person.
Obviously there are no answers here. I'll just have to come back to this again later.
Comments
I have one addition to the "various scenarios" which might necessitate a move to a care facility:
Urinary incontinence (certainly on the scale of my mother's, which is fairly prodigious, and possibly even lesser urinary incontinence) that can't be medically alleviated.
Also, an addition to the "Con" column under "Moving into care":
The ability to control the introduction of types of medication. I mention this because one branch of our family had an experience with this. When my aunt was moved to a facility (a move which turned out to be good for everyone, including my aunt) her family was surprised to note that she went, overnight, from being well animated to cowed. When they asked about this development, they were told that it's a common initial demented reaction to being placed in an unfamiliar environment. When extreme placidity (to the point of nodding off almost constantly) continued into a second week, her daughter-in-law's (who is a nurse) suspicions were aroused. She demanded to see my aunt's medication schedule and discovered that she had been put on a heavy duty sedative. The reason given was that she had a history of being combative prior to the facility move. This was true, although she was combative only with her husband. The daughter-in-law had to maneuver through quite a conflict to get her off the sedative, which included having my uncle sign Medical Power of Attorney over to her and enduring dire predictions from the facility staff that if she was taken off the sedative and became combative the facility would have to evict her. As it turned out, once the sedative wore off, my aunt was fine, even with her husband, who visited her daily. This was in 1997-1998, so this sort of situation may no longer be as common as it was.
I'm impressed that you've taken into consideration the issue of discipline, which is, of course, necessary in a group home setting for the demented (it's also necessary in a group home setting for just about anyone) and how amenable your parents would be to this.
And, the cats. Ai! I suspect many people would forget about or trivialize the fate of beloved pets. I love our cats, they are important members of our family, so I salute you for including them on the lists. I have a vague memory of hearing about facilities that try to incorporate residents' pets into the living circumstances (it was probably something about Green Houses, although I can't remember). I suspect this is not even close to being a wide-spread practice, yet, and probably costs extra, considering that a pet minder would be necessary, as well as such procedures as making sure residents didn't eat pet food, possible allergies of other residents to pet saliva and dander, etc.
Although something tells me that you may never discover the perfect list or the absolute analytic technique that will reveal the answer you seek, I do believe that any decisions you make as a result of your efforts will be much easier for you to live with than if you hadn't done the work you're doing. You will have considered everything of which you are capable, and you will know you've done this. If and when a move to a facility becomes necessary, if, after the move, you discover circumstances your analyses didn't include, you will know better than to blame yourself for these, as you will know you analyzed and increased your awareness to the best of your ability prior to the move. You will also not be flummoxed when dealing with such situations, as you will have much analytical and administrative experience informing your response.
Hi Mike--I'm still struggling with these questions, even though my mother has now been in assisted living for a month.
I just don't know what "happiness" means to my mother anymore. I know it's connected to what is familiar to her, but that, too, is a moving target. Before she moved there were times when she'd ask us to take her home while she was standing in her own living room. Her happiness seemed to depend on smaller and smaller events and acts. A cone of ice cream or a ride in the car. Always something in the present moment.
I think because so much of our own happiness depends not only on the present, but on the past, the future, the possible, the impossible--everything our parents seem to be losing--the decision to curtail these dimensions is so painful to us. We feel that as soon as we make the decision we are reducing their lives to this one dimension, where the pain can no longer be alleviated by the possibility of anything else. They are human beings, and how can we take all that away from them?
But we haven't taken them away, the disease has. We're just trying to imagine how one makes the shift from the big, abstract world that we still inhabit to the small, ultra-personal world of Alzheimer's. How do we help them make this journey? We may define freedom as a reduction of limits, but they may know it as a firmly-structured, reassuringly predictable environment that compensates for the cognitive chaos.
I no longer know what makes my mother happy, besides the immediate pleasures. She's struggling now, being in new surroundings, but I don't really think she's grieving the loss of her freedom to come and go as she pleases. She no longer wanted to do that when she was at home. I'M the one, I think, who is grieving that on her behalf.
So you're right--there aren't any answers, but consider that your parents might now be looking at the world from the other end of the telescope.
Going on your latest post and our family's propensity for limited contact between each other whenever possible (this problem notwithstanding), the other issue to throw into the pot is the change in how much time and interaction, you, Greg & Rachel will have with your parents, once they are in care.
Is that a pro, a con, or a bit of both?
I'm not sure