Those of you who know us will be aware that my wife Jackie has primary progressive MS, having been diagnosed as long ago as 1988. Since then, and especially since we moved out of the Three Moles in 1997, I have been her main carer. We have had a lot of laughs as well as difficulties over that period of time and have coped pretty well, more recently with the help of some lovely paid carers. Black humour has certainly helped us through those years!
It dawned on us both as recently as this week that our situation is likely to become untenable in the near future, especially once I start chemo. There is no way of knowing how I will be affected by that but it is highly likely that I will be unable to support Jackie in the way I have always done. She is very prone to falling and does so several times a week, sometimes several times a day. Without labouring the point, I can't continue to lift her when she ends up on the floor. I know I shouldn't be concerned about it but there are only so many times you can call on the ambulance service to rescue her.
We decided to consult our MS Specialist Nurse about immediate and longer term residential care options. The rationale for picking her brains in particular is that she has MS patients in homes all over the area and is well placed to know how well the individual needs of those patients are catered for. That is a really important issue for us - if you know Jackie, you will also know that she has lost none of her ability or enthusiasm for conversation, and engagement in general. Our experience of respite care in the past has been generally poor, as they just dump her in front of the TV with a lot of old ladies in various stages of decline. Not only that, but Jackie still wants to be as independent as she can be in the circumstances, and that includes getting herself around using a wheeled walker. I understand that to do that in a care home environment, she needs to be supervised, and that requires the use of additional staff resources. However, after a week away in December, she lost almost all of her ability to get about on her own and has never quite recovered it all since then.
So, the tough decision is this. How will we cope over the next few months when neither of us is able to support the other? No amount of supplementary care is going to address the issue so, mainly at Jackie's instigation, we have decided to go for residential care for her sooner rather than later. Social Services and the MS Nurse agree that it is the only realistic option in our circumstances.
There are significant benefits for us both in taking this course of action. Jackie will be properly looked after while I am hors de combat and I won't have that constant worry about her welfare. That should enable me to focus on achieving the best possible outcome from the treatment. The second advantage is that while I am still well, and while we have time to choose, I can research various options and make some valid comparisons. If we leave it until we hit whatever crisis may ensue, my fear is that Jackie will end up with a less than optimal solution to her needs. That's not to say that the family won't do the best possible for her - of course they will - but choices may be limited if it has to be done in a hurry. Not only that, but Jackie will be hit by the double whammy of losing me and her home in the same week. By taking this approach, we can take one 'whammy' at a time and get her settled into her new home before the other crisis hits, assuming that it does at some point.
The search starts today and I am off to see what I hope will be an ideal environment for her. All of the feedback I have had on it strongly suggests that this belongs in the top two of our shortlist. They have a track record of being especially responsive to the individual needs of their residents - and that is just what is needed. Whether they choose to take her is their call - they don't operate a waiting list but look for a 'good fit' with the rest of the residents. Even that policy bodes well as they are clearly thinking of the welfare of all of their residents. As ever, I am optimistic!
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