Thought I would put a post on to summarise some thoughts I have had over the last day or so. I hope that those who are just started out on their caring journey, in particular, will find it helpful. I know that putting my thoughts down will help me.
Brief background is that my wife was diagnosed almost 6 years ago at the age of 54. I was 55 then. I gave up my job and became self-employed to look after her. Its been tough. She was admitted to hospital four months ago and is still there whilst we wait for a care home bed. The care home has become necessary because dementia kicked in about two years ago to accompany PD. It became likely to me that a care home would be the ultimate destination for my wife but I am still surprised that it has happened so quickly. The hospital (who have been superb incidentally) have essentially told me that care home is the only route to give either of us a manageable outcome. If she came back home, they think there would either be a crisis leaving my wife vulnerable or that I would burn out.
Yesterday, for the first time in four months, my wife and I went out for three hours. We went to a local shopping centre, had some lunch and a look around a couple of shops before I took her back to the hospital. I was quite emotional afterwards and I couldnāt understand why straight away.
I realised how much that trip took out of me. Being alert for three hours, making sure that she could get out of the car without trouble, she was safe on her rollator, she wasnāt bumping into anyone or anything, she could sit down easily, she was OK whilst I queued for food, she could eat her lunch easily, she wasnāt spilling her coffee, she wasnāt spilling her sandwich, we could get to the shops she wanted to go to, we could get back to the car easily, I could get her comfortable in the car, I could park at the hospital in a place where I could get her back to her room easily etc etc.
Reading that back I appreciate that, to some, that may seem trivial stuff. But it made me realise that when my wife was here, that was my life 24/7 and I do mean 24/7 as neither of us had a full nights sleep for two years up to this Summer. This isnāt a pity post though and I know that however hard it was and is for me, it is ten times worse for my wife.
In our case, the thing was that the caring need increased negligibly day by day. Looking back, it seems that each month I did a little more, not so much that you would notice comparing one month with the next but over a period of five years, it grew significantly. No-one asked me to do this, least of all my wife. Like all carers I think, I did it out of love for her but Iām now not under any illusion how much it has taken out of me and also how much it affected my relationship with my wife, which for a few months earlier this year was much more patient and care than wife and husband.
Now that the nursing staff have taken over much of the caring responsibility, our relationship is back to ānormalā, albeit that the outcome is not what either of us expected or would have wanted in an ideal world. At the moment, I think we would both settle for my wife getting good care from professionals and a solid relationship between us.
If you are at the start of your caring role then I say all of this not to scare you but to help you become aware of the path that you may be on. Stay in the present and be alert to the small changes in the condition that require more help. Be prepared to shout for help from others and try not to assume (as I did) that you can do everything. It that way, you might be able to keep your relationship with your lvoed on on a even keel which can only help both of you.
As all of us in the PD community know very well, everyone is different, and everyone is affected differently by this condition. I hope that you are better able to cope that I have been.
