Not sure just who is reading this blog if anyone for that matter, but if you are reading it and it helps you to understand this condition, or if you’ve faced a similar situation and get a tip from me I am happy. I am mostly doing this because of the many people I have spoken with who just want to know what goes on with other in this situation, what might come next, how others cope.
I have mentioned previously that I think my husband has come to a point in this condition where he is not able to bounce back; the progression at this point is a slow steady downhill progression. More falls, more sleeping, more voice deterioration, more eye issues, muscle deterioration and withdrawal. I am sure I can list many more but I think the point is made. My goal now is to spend as much quality time with him and do as much as we can while he is still able. I have to sometimes force him to come with me on little errands just to get him out in the fresh air and to stimulate his senses, he really just likes to sit at home. I wish I could afford to travel with him but we do not have the funds to do so, I know he would love to go to Ireland and I keep my eyes peeled for trips advertized such thinking maybe we will be able to take advantage of it, I hope so. We still have 2 kids in college and a wedding next summer so it won’t be any time in the very near future but it’s always nice to have a day dream. We still have our Friday night date night where we go to dinner, sometimes with family and sometimes alone, but I won’t give it up. We live near Saratoga Race Track and I took him there this past weekend, just for a few races but it was nice to get out, I am planning on taking him a few more times, I think it’s important to stay as active as we can while he can. I would suggest that to anyone going through an illness with a loved one, don’t be afraid to make the effort to go out and do things and see places, even if they give you a hard time about leaving the house, you’ll only regret it later when you realize it is not possible to make those trips. They don’t have to cost anything either, a ride around the lake, a trip to a local park with a book. I feel like I am rambling and I think you get the point.
Signing off for now, don’t be afraid to post a reply, ask a question or two or even tell me if you’re going through something similar.
May God Bless you all,
Kelly
Yes, Very similar. Carolyn now stas in bed for 12-13 hours a day. Once we are out of the house, she enjoys it; thst's getting harder to todo. Even with my help, buttons, shoes and socks, it takes a lot of effort for her to get ready. And after a couple of hours she's ready to go back to bed. The PSP has already done terrible things to her body and is now attacking her sprit. We're still in the early stages of this thing. My best estimate is a 44 on the test.
ReplyDeleteMy heart landed my in hospital last week, I'm sure the stress we have because of this condition contributed. Everything is fine with me, the Docs put me back on track. It was a wake up call, and I'm now actively seeking outside help for respite time. I must remain able to care for her. And, you must also be there for yours.
Be careful the PSP does not also consume you.
Forrest