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Ataxia Support Network

New plateau


#1

I haven’t been here in a few years. Sorry for that. I am my wife’s caregiver who was diagnosed in 2001 with an unknown type of ataxia. She pretty much followed the Ataxia playbook of having more trouble walking, you know the drill. It’s what she lost over the years that breaks my heart. She lost her business, her right to drive, most of her friends, being able to travel, and on and on. She can no longer walk or stand without a great deal of assistance. She also has developed Ataxia Dementia. Neurologist tell me there is s difference between this dementia versus Alzheimer’s. In early December, she reached a sudden and new plateau. She was hospitalized, and sent to a dementia ward in a nursing home for rehab. My two sons and I felt she would better be served at home so we brought her home right before Christmas. She no longer has control of her bowels and bladder, chewing and swallowing, speaking, feeding herself, and has completely lost her short and long term memory. Her neurologist says she is at the end stage of Ataxia, no more plateaus to reach. I am devastated. She is 70 years old.
Dick


#2

Dear Dick48,
I am so sorry about your wife, as ataxia is so difficult to deal with! I’ve had ataxia over 20 years and it has progressed and will continue to do so. For years the neurologist didn’t know the cause of my ataxia. Then in 2017, through genetic exome testing, then a skin biopsy followed by a blood test, I found out my ataxia is due to adult on-set Niemann Pick C disease (NPC). Ataxia takes away so many things, physically as well as mentally! My best to you…, ;o)


#3

I’m so sorry to learn of your very sad news. It’s obviously been a very challenging time for the whole family. I feel sure that while your Wife was able to focus mentally, she greatly appreciated all the love and support both you and your Sons were able to give her. xB


#4

I too am very sorry to learn of your sad news. God bless you.


#5

I am so sorry to hear about your wife. You are clearly a very loving husband,and I can only imagine how hard it is for you. She is very fortunate to have you, though she has lost so much. Take care of yourself, and have your sons at least provide respite care so you can do things for you. Consider caregivers support groups, too, since they can be so helpful to you. If you are in the US, the Alzheimer’s groups have them. Understand, too, that it is is very normal for a caregiver to get angry with the person you are for even though they can’t help it. Everyone does sometimes. Best of luck to you both,


#6

Hi Dick. You made the right decision by bringing your wife home. It will be a hard road, but you and she need each other.

Make sure you leverage all the in home care help that you can, and be sure that you stay in charge of what tasks need to be done. For example, if you’re concerned about lifting her, get the helper to assist you with any tasks that involve moving her around first, and have them leave tasks that you feel confident handling yourself.

If you’re having a hard day yourself, it can help to make a list of what needs to be done and then reward yourself along the way. Maybe with a beer, if you drink them, or put on a tv show that you like. Have one of your kids come over and delegate something to them when you need to. Don’t forget that you have friends too. If your house or lawn needs something, don’t try to do it all yourself. Call someone and ask for help. Or get someone from Craigslist and give them 20 bucks to do the chore.

Remember that you are getting through this, you make your wife’s life so much better, and she loves you. That’s why she chose you to be her special guy in the first place.


#7

What a wonderful reply to my post. Meant a lot to me.


#8

Hi Dick…….I am in the same boat as your wife at this time. And yes I have lost so many things in my life. Seems to all happen to fast.
The worst of it is the loss of friends that use to come around.
If only they knew how lonely it is with out visitors.
dick I understand how this is all so overwhelming to you but as I see for myself my time is close to your wife. I am still able to talk with my husband. Fro m here let me just assure you that your wife would want you to think of your good times together and be happy for the life you had together.
Just so you know I plan to make it known I am a happy one for all. My prayers to all and Blessings to those struggling.


#9

Dear Dick I am so sorry to hear! I had Ataxia for almost five years and it is getting worse! Most of my friends do not understand. I lost my husband in August of 2017 due to Cancer, he suffered. I sill go on cruises with the help of a scooter and cane! I used to go out and listen to bands but not one friend ever asks me out. Yes, Ataxia robs you of your life! Please give your wife a hug for me. Take care of you.


#10

Thank you Vickie and Beachbaby. I miss my wife even though she is home. Not sure where her mind is. I miss our talks and her reactions to news stories. Sometimes I feel guilty keeping her home. Is it for her or is it for me?
Dick


#11

Dick, it is for you both. Please do not be feeling guilty. A safe, known environment is always best. No hospital nor nursing home can ever have the feel of home. Your wife may not be able to express to you that feeling of safety home can provide. But I can assure you even little triggers of memories can be monumental within a nurturing environment.
I say this as my wife and I cared for my wife’s twin sister in her home before her passing and as they say 'Home is where the heart is". So again please, do not feel guilty nor selfish. This is for you both.

Merl from the Moderator Support Team