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My husband was diagnosed with Multiple Systems Atrophy in 2015. He goes to PT and OT and walks with a walker, with my assistance. We have been told this is a very rare disease with no answers. I know Dementia is now present and our days are so difficult. He struggles to speak, but the repeats are very loud and he never ever stops talking. Is anyone going through this? I just can not calm him down, very confused and agitated up to 6:00pm then he starts to relax, as I know he is probably tired. Though in PT he is so very quiet.

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I use to take care of a woman just like that. She would yell non stop for her husband if he dared leave the room. I would go to her and talk rub her feet and legs, she would calm down, it takes so much patience, the main thing is tell your self your husband has a serious disease that he has no control of. That he no longer has control over what he says and does. It’s hard .
Now I take complete care of my own husband that had multiple strokes,now is in advance dementia and early Parkinson’s disease. So I know what your going through. My husband stroked out in November of 2014. He has gone down hill ever sense.
My husband also repeats questions over and over , mostly asking me where my first husband is. I continue to tell him Roberts dead . He ask from what I say cancer, he says he’s sorry that happened. When he stars it goes on and on I try to change the subject , but it doesn’t matter he continues to ask. My husband use to be very verbally abusive in the past before his multiple strokes. Now at times he gets what they call sundowners that’s when the terrible confusion sets in. At times around 1:00 am he will start in about going to the boat to get it ready to take people out. He was a boat Captain owner in Clearwater Fl. One time it was so bad one of the nights , I had actually feel asleep. I woke up to a noise he had gone to the door opened it. He was going to the truck. It scared me so I bought an alarm for the doors. His dementia is terrible. He’s completely gone mentally. But as he was so mean before he’s a sweet heart now. Like a small child but he minds everything I tell him to do. We have live in our new home in Tx 3 years now but he still doesn’t know where the bath rooms are. At times he won’t get off the toilet he says what do you want me to do. I ask are you done he says yes then I tell him to get up . I bath, Shave, cut his hair, dress him, change his pull ups and clothes 3 to 4 times a night. When I tell him it’s time for bed I have to lead him there . If I walk away he will continue to sit , then he will ask what do I do now. I tell him to lay down. I have to tell him each and every move he makes all through the day. He has no idea where we are, he thinks we live in a hotel at times. It’s is devistating to see him in this condition. I’ve bought everything he needs for complete therapy at home, a treadmill that goes as slow as a turtle, air strider, all the rubber poles for him to be able to sit and bend to strengthen his arms,leg weights,rubber bands for strength training. He doesn’t like doing the excercises at home.
The VA has approved a day care center for him to go up to 5 times a week. If your husband is a Veteran contact the VA where you live, if he goes a few times or for the 5 days you will at least get a well needed break.
The daycare here will pick him up in the mornings do bring him back by 5:00 . I will go see the facility before signing him up.
I hope this helps . Your sure not alone . God Bless. Toni
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Marilyn3300 Oct 2019
Thank you so much for writing me. It does really help to read what others are going through. This is just so difficult, my heart breaks for my husband, I am with him 24 hours a day, but some days it just takes more patience than I have, My husband struggles to walk, his hands are very weak, he has difficulties swallowing and digestion and because his vocal cords are affected he speaks in such a loud screech. He has accidents in bed every morning, as he will not get out of bed. This awful disease is attacking all his muscles and he can no longer do anything on his own and I believe I can handle all his needs, but it is the dementia that I really struggle with after a long day. My husband is not a veteran, but I need to look into a day care center, I just haven't been able to get myself to do that yet. Two days a week I have 2 hours of ME time when he goes to PT and OT, but 2 hours goes really fast with the drive time and doing all my errands. I am always being told I need to take care of me and do something for me, but even though I get so frustrated I have a difficult time hiring a caregiver, as I know he won't be happy, so I find it difficult to do anything for me. I know my husband will be in a wheelchair soon and I know I will need to have help, so for now, I am trying to handle everything, but for the first time in my life I feel so mentally exhausted, but I try to put his needs first.

I wish you the very best with your husband and it does help not being alone. Thank you for sharing what you are going through to me.

Marilyn
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My Husband was non verbal for about 5 years.
He made noises. Constant noise. Sometimes very loud noises.
You learn to put up with it.
You learn to use headphones yourself. (when it is safe to do so)
And you keep in the back of your mind that one day you will miss the noise.
If he is actually talking be grateful for that.
Have you discussed with the Doctor or Hospice if he is on Hospice a medication that will quell the anxiety a bit? It might take a while to find the right one and or the right dose but it should help.
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Marilyn3300 Oct 2019
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Thank you.
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My husband was diagnosed with Parkinsons in 2017, but recently his neurologists says that is MSA. There are many similarities to parkinsons, but the nightmares scare me. I feel I am in danger sometimes. I am in the process of trying to re-finance so that I can make a space just for him. He is also a veteran, so I need to try and get more help for him. So far though he is still sociable and loves to go everyday if I will take him. He does go to VA 3 x week for exercise.

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Thanks so much Marilyn and Toni for your feedback! I am also in the process of trying do get work on the home for my husband"s needs. He is fighting me tooth and nail not to. He needs his own area now. I cannot keep my area clean. All day I am constantly cleaning, disinfecting and picking up behind him. I took pray for a lot of patience and compassion.
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