Thank you Tyler,

you described it perfectly " survival mode" yes that is what we have to do. I know what you mean about the good/bad days.
I am currently taking something to "take the edge off" and it is helping.
Somedays my heart just breaks into at the thought of loosing Donnie, and some days, when I am watching him suffer, and struggle, I pray that The Lord just take him on home so he can have peace and healing.
He is and always will be my soulmate. This April we will celebrate 25 years. I would love to have another 25.

Prayers for you and your wife.
Liz

need to vent....lol....today was a day that I just wanted to go outside and scream!!!! but I didn't. I just left.
I go home everyday for lunch to fix Donnie something to eat. The house was a mess. It really wasen't any different than any other day, but today I looked at him and I said....and I know this is mean, and I feel bad for saying it, but I said " does it not EVER cross your mind to look around and pick up and clean up?" well, of course he just looked at me. I was wiping off counters and straightening up and he was just standing there watching me....I said " if you r not gonna help, you r not gonna watch me do it" "go into the living room" he did. when I looked in there, he was kicked back in his recliner (where he stays 95% of the time). I just glared at him and said "you should be ashamed" and he started laughing at me. I could have very easily just lost it, but I thought there is no use....so I told him bye and left to come back to work. then I have felt bad all day.
lol...I'm sure no one else has days like that???

Liz

Where in Texas? We are in grand prairie, between dallas and ft. worth

The road of the caregiving spouse is very difficult. Sometimes just overwhelming. You are only human trying to manage in a very difficult situation. Caregivers are only people, we are not Saints. Forgive yourself often.

Thank you Concerned partner. Yes this role is very hard and only gets harder.

Donnie has been down in his back for 2 weeks now. he has never had an issue with his back before.
Could this be part of HD?
I took him to a chiropractor today. He did an adjustment and he wants him to come back tomorrow.
also, something happened Tues. night that has never happened before. We went to a restaurant and Donnie went and fixed his salad. When he came back to the table he started eating his salad while he was still standing up. I had to remind him to sit down at the table.
He has been doing similar things to that for about a month now.
ex. he will go to the puppy pad and just stand there looking down at it and wait about 3 min. then he will pick it up and throw it away. Same thing at the sink or at the table or he will just stand beside his recliner and look at it before he will finally sit down.
Is anyone else experiencing this type of behavior?

Liz

Hi Liz

I am fairly new to the forum. I can relate to almost everything that you experience, as I am going through much the same with my husband. He is home on disability and I still work full time - but at times I find it extremely difficult. I find with my husband that it just takes him 5 mins to process what he is doing, going to say, etc. I have learned to just give him the time for his brain to process what he was going to do, it doesn't help that his short term memory is pretty bad and so sometimes he just can't remember. I do gentle reminders with him and usually get an oh yeah from him. I have also noticed that he seems almost clumsy when he does things, even when sitting down, it is almost like he is falling into the couch/chair.

Thankfully with a lot of medication adjustments and progression of the disease, his moods seem to have stabilized. That is one phase I am not sure how we survived as the outbursts and verbal attacks seemed unreal. Hopefully they are a thing of the past and don't resurface.

The one argument that seems to be ongoing is his driving. I don't think he can drive anymore and his doctors seem to agree, but are hesitant to fully take away his licence, so it is left to me to deal with. He thinks he can drive if he has a babysitter while he is driving - and my argument is that if he needs a babysitter then he shouldn't be driving. 90% of the time he is good and doesn't argue, but the 10% when I am just to tired to chauffeur him he uses this against me and then says he will just drive himself. Not sure if we can finally get past this issue and put it to rest once and for all.

Anyway, thanks for reading some of my story and I jsut want to say reading these posts helps me feel not so alone in this.

Maria

Nice to meet you Maria.
Yes we seem to be living very similar lives.
I have not had an issue with Donnie driving. Somehow he realized that it was just too dangerous. He hasent drove for about a year now and he seems ok with it.
yes, looking back, I don't know how we ever survived the days when he was so mean and having such terrible outburst of anger.
I am also still getting to work full-time but I really feel like, considering how he is progressing so fast right now, that we are in for a hard year with him.
Donnie also just falls into the chair that he sits in about 8 hrs per day, and has a very hard time trying to get out of it sometimes.
If I might ask, where do you live?
Do you have children?
how long since he was diagnosed?
CAG count?
I hope you and your husband have a good weekend.

Liz

I live in Calgary, Canada. We have children, but only one is biologically his and is at risk, the rest are from a previous marriage. His son is 32 and does not want to be tested. I don't really have a date for a formal diagnosis as he was tested 10 years ago when he was having severe psychiatric issues before he had any movements. He finally ended up being admitted to the psych unit after multiple suicide attempts which I could not cope with anymore. This was the best thing ever as they kept him until they adjusted his medications and things have calmed down significantly since then. His dad and brother are both deceased from this disease so we knew it was in the family. His CAG count is 45. He is turning 54 on the weekend. His dad was 53 when he died and his brother 35.

It has not been easy for any of the kids who are now all adults. Some of them are estranged from us as theyare in denial regarding his condition. This has been hard as well as I know I have to keep reminding myself that it is the disease that is changing him and not him personally.

Take care

Maria

Hi Eteeftaller

I too am a caregiver for my husband. I work full time. About 5 1/2 years ago my husband moved into a personal care home as it was no longer safe for him to be alone. We had home care before that but they were no longer able to provide the level of care that my husband needed.

I come and read occasionally but don't often leave comments. Just the way I am I guess. Sometimes it's because I just don't make the time to do so. My days are full with work, visiting my husband, taking care of the home etc.

Many of the things I read I have been through. My husband is in the advance stages. We've had some scares the past few months with his health. Some of which I was told he wouldn't survive the day. I thank each day I have.

mc1 - when my husbands driving became a concern I talked to his neurologist about it. He performed a test and concluded that he was not safe to drive so his licence was revoked. I had to get a safe that could be locked when my husband was in that stage. I needed to lock up all keys, money and valuables as if he saw them it would provoke an outrage. It may help to not have the keys in sight.

Maria and Lisa,
thank you for taking time to respond.
My heart goes out to you both.
It is so hard to sit by and watch the man who once was so strong, active and loving turn into somewhat of a child again.
I was laying on the couch yesterday after church and I was just watching Donnie and my heart was just breaking. he seems so lost and unsure of what to do next.
I have learned to be super patient and in slow motion when dealing with him.
I hate this disease and what it has done to our family.

Maria, I hope your husband had a great birthday

Liz

Donnie and I have been married 25 years today.
All tho the past 3 years have been a nightmare at times, I still wouldn't trade our time together for anything. I was looking back at my post from 2013 and I am so thankful that right now, I am not having to deal with that man anymore. He is MUCH calmer now. I hope it stays that way. I can cope so much better when he is not mean.
the past few days he has been so loving. He literally follows me around the house saying "give me some sugar". lol. non-stop. It gets on my nerves sometimes but I just try to enjoy this time that he is having cause we all know how fast that can change.
We go back to his dr. Friday in Nashville. We go about every 3 months.

I hope everyone has a good day.

Liz

Happy Aniversery!

I took Donnie back to his neurologist on Friday. Overall I think we had a good visit. Dr. Claussen said he thought Donnie was doing about the same and wanted to continue his medicine the way it is. He said he could tell his cold had him more confused but that was normal. he ordered him physical therapy. he has ordered it 3 times already and Donnie won't go. we will see if he goes this time.
he is getting to stiff and gaining weight because he don't ever do anything but lay on the couch.

It is a beautiful day here in Tennessee. I hope everyone has a blessed day

Liz