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.
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
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
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.
Thank You