We are in Minnesota. My husband Kurt started with FTD and psp. And now CBD. He is in a memory care facility at great personal expense. We go to church each Sunday and have tried To include Kurt in some additional activities. I realized today that it is not good for him. I am sad. It is physically taxing for me to transport him but I am cool with that if he enjoyed. But today I realized he doesn’t. It is just the next step and I want God to free his soul as it is harder and harder to remember the man I married. My son in town is most giving and caring so I am lucky I have him but a hard day today.
Another change: We are in Minnesota. My... - PSP Association
Another change
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We found with Dad, also CBD, that group settings were hard on him as he progressed. He seemed to have a hard time focusing on more then one thing at a time and when overwhelmed he'd just "shut down". I believe you have made the right decision for him at this time.
Have you thought about asking your priest/pastor/minister about visiting your husband in the care facility? It would be one-on-one and your husband may find it more soothing. Ours visited dad couple times a month for 20-30 minutes while he was in a nursing home.
Ron
My wife CBD didn't get to Church as she soon became bed ridden. But some of the ladies from our church set up a roter to sit with her and allow me to get out. Whenever I tried to thank them they would reply they loved sitting with her even though she couldn't talk. Her room was a holy place. They are saints in my book. Our minister used to come to the house once a month to give us communion which we found helpful. Love and prayers for you and your family. Ken.
sadly, Susan, I can relate. My husband found it extremely hard in the last year of life to be in crowds or even small groups including family members. The stimulation was way too much for his hard-working brain to handle. He had the typical passivity/apathy that comes with CBD. I worked hard to find what he enjoyed and it was usually just something simple with the two of us very quiet and no expectations of him. It’s a hard life there’s no getting around that. But at least I realized he was on the way to the end and so I understood I had to treasure that time with him because it was all I was going to get. At least I appreciated the last year we had
Susan, my husband with CBD finds bigger groups hard, too. Four is about all he can handle IF the others talk relatively slowly and understand that he is just happy to be with them and doesn’t participate much. Our priest is willing to come for pastoral visits and altered the entrance to the church so that my husband can get his power chair up the ramp and into a space in the front (it is an old country church with pews tightly placed). We don’t stay for any other activities because husband cannot handle them. Yes, some days are acutely hard for me , as well , as I watch him — and me (I have aged five years in the last year with the extra physical and other demands on me)— deteriorate. But, like some others, I know that I will look back on this time as a sweet, sad time. There is a passage from John (21:18) that says “when you are old you will stretch out your hands and another will dress you and lead you where you do not want to go.” I think of that often. Our loved ones’ sufferings are epic and we who care for them are heroic , in our way, though only we understand this.
Marilyn
Thank you