I'm new to this and it's alot to understand!

[nannyann]

Hello All
My husband of 41yrs has been diagnosed with PSP. He is 61 and I'm 59. He has had symptoms for almost 2 years. His cognitive functions are just about gone and he is falling almost daily.
This past Friday we went to the VA and came home with a bath bench, commode chair and wheelchair. When we got home, he told our 26yr old to put all of the stuff in the barn because he don't think that he needs it.
The VA NeuroPhysic even hunted a dementia caregivers support group and called them for me. I've been to one meeting and go to a meeting this Tuesday.
I used to come to this site years ago and didn't know that I'd be needing it for something like this.
I'm at the point that I need all of the help that I can get. I'm not handling this very good and have been in a bad depression myself.
nanny

[Aussie]

Hi Nanny,
I'm sorry to hear your news.It is not uncommon what your husband has said,that he dose'nt need the equipment for that would be acknowledging that he has a problem and some of us are just too proud to have to admit it.My father (PWPSP) was just like your husband. Dad had a very hard time allowing others to help him even more so to admit there was a problem. I will write again soon...this site has been quite for so long and i just popped in to see if anyone needed us...i am on night shift tonight and need to get ready for work but i will email another wonderful person who was also a carer in your country and i know for certain she will respond asap. Until then please take care and know we will help in any way we can. God Bless Glenda

[EAE]

Hi Nanny,

I'm the one Glenda spoke about, the one she was sure would respond. It's fun to know that your note reached her in Australia and she emailed me to look at the forum, so your ask for help has gone almost around the world (at least down under and back).

This site was VERY active years ago when my mother suffered from the disease. Several key individuals died and the rest of us have tried to keep it going but not as masterfully as Bob and JanDel. After I would get Mom settled for the night, I would come here for support, a good cry, for someone to tell me I could hang in for one more day. A more caring group of people couldn't be found.

I'm so sorry to read of your husband's diagnosis. Your road will not be easy, but I hope you will see some silver linings in the clouds you will face. I do think my years of caring for my mother were some of my finest hours, in spite of their difficulty.

My father was still alive at Mom's diagnosis, and he really didn't want to see any of the "handicapped items" which sit now in your barn. It was funny when he relented, because the OTs & PTs weren't going to give up, and got the raised toilet seat. He "ate crow" and said it was SO much easier for him, that he really enjoyed them! Ultimately these things will make your life easier, in addition to making your husband's life safer. Move them in little by little.

Dad had a stroke and died, and I took over Mom's care. I promised Dad I wouldn't put her in a nursing home if I was able to care for her. I learned a lot, read a lot, adjusted everything, and she stayed at home. All situations are not alike, so I know some people aren't able to do that, but I feel blessed to have had those years with Mom. I do think Dad died from the stress of the illness, so I'd caution you to take care of yourself. At least once a day do something only for yourself! (I say this, laughing at myself, for I didn't always do that!)

Please know that we are here, and will do whatever we can to help. The bonds created here are strong! Glenda's coming here for Christmas!!

Take care, may the days ahead be gentle to you and your husband, and please know that we care!

Beth