I am so sorry.

It is the everyday losses that are so hard.

CP

Yes CP they definatly are.
It is so hard to watch him get worse every day.
Today is not a good day for him. I went home at lunch and he just started crying. I said "honey what's wrong" and he wouldn't sat anything for along time then he said " I just feel so useless. I can't do anything. I should help you and I just can't" I said "Donnie it's ok. you are fine. I will do whatever you can't. You're just having a bad day today. It will be ok"
He is so pitiful. I can tell he is extremely depressed altho he is on medicine for that.

Question:
has anyone else experienced their HD partner crying a lot?

Dr. Claauusen has scheduled Donnie to see a Psychiatrist on March 31. Maybe they can evaluate him and get him some physic. help.

I also feel as tho he won't be driving much longer. He rarely ever drives anymore anyway but yesterday I told him to drive us to church. Its about 3 miles away. He drove like a maniac. He scared me to death. It was like his brain wouldn't tell him to put on the brake or slow down quick enough to turn.

Liz

Lisa Wrote:
-------------------------------------------------------
> My husband has HD and there is nothing easy about
> my caregiving role. He lives in a personal care
> home now and I will admit I still struggle. I am
> constantly grieving losses. Both his and mine. I
> don't think you are weak. It sounds like you are
> human and a loving and caring wife. I too cry at
> his appointments. In fact the social worker at his
> care home ensures that there is a box of kleenex
> in front of me every time we meet. You're not
> alone in these feelings. Be proud that you are
> accepting the doctors help because anything that
> makes this even a little bit easier or makes us a
> little bit stronger is a good thing.
>
> If you ever want to chat I can listen.
>
> Take care of you.
>
> Lisa


Lisa is correct that you are not alone. I certainly have my struggles as a husband, watching the decline of my wife. It is quite common to get to a plateau of sorts and then hell starts breaking loose again, so they say. Nothing stays quite the same as HD progresses.

I saw in this thread a question of whether the person with HD crying a lot is common. I have not seen this and my wife takes sertraline and we try to stay on top of mood as she is also on Xenazine. Mood and tears are thankfully not a problem. If it is, see your neuro for some med cocktail advice.

A final note on the difficulties of caregiving. It is very difficult. I feed my wife and she is just not becoming incontinent where she steps into the bathroom and urinates before getting her pants off. Sorry for the details.

She is better off than my Dad, who just died of complications from late stage Alzheimers, and my 83 year old mother cared for him till the end. The point I wanted to share is that my Dad passed away and yesterday was his burial. My mother and children would give anything to have that "one more day" to stroll my dad down the hallway or get him out for a stroll in the neighborhood, even if he could not communicate. We know he enjoyed as much.

So find ways to enjoy the time together. I don't have the answers by any means, but that is what I am trying to focus on. My wife actually laughs at herself at times, so when she does, I am going to laugh at/with her, and she seems to like it when I call her a goof ball.

Very best to all, keep the faith.

TylerFitz,

I am soo sorry about the loss of your father and what your family has went thru and are going thru.
I am trying to enjoy just the little things that make Donnie smile now, which are very few. Its like he is just in another world most of the time.
As I snuggle up to him in bed at night, I try to think that even tho things aren't the same, at least I can just cuddle up next to him and feel the warmth of his body cause sooner than later I'm sure I'll be all alone in that bed and that just makes me sooo sad to think about it.
He sleeps a lot now and he will just fall asleep in the recliner or on the couch and when he wakes up I'll say " I thought you were gonna sleep all day" and he will smile and say "I'm not asleep. I wish I could sleep" that seems to tickle him. He also loves the little house dog that our son Dalynn got for him about 2 mo. ago. His world seems to revolve around taking care of that dog now.

How long since your wife was diagnosed? what was her CAG count? Do you stay home with her all the time?

Liz

Hi Liz,

Thanks for your kind words. I think you will find that the warmth you described is enough to get you through the day, even though your loved one has obviously changed. That is why I stepped out of my own situation and explained how my Mom has reacted to the passing of my Dad. It was hard for an 83 year old woman to be a caregiver for an 84 year old man, except for the last 45 days in the hospital and nursing home. But like me, she would love to have another day like it was with Dad at home back in December despite his Alzheimer's. Home is not the same, so to speak.

My wife was diagnosed back in 2005 and she stopped driving back in 2012. I used to travel more but currently spend most of my time at my home office as a sales manager. I care for her except when I am out traveling which is usually no more than two days a week, sometimes every other week. So I am out maybe five days a month, not much. I have caregivers who come in and they currently cover the 10 am to 6 pm time. My 15 yeard old son is at home for dinner from high school and he helps get her off to bed. Don't know her CAG count as she was never tested. The physical exam by a neuro, with her family history, concluded she had HD back in 2005.

Keep the faith,
Ty

Ty,

Again I am so sorry about the passing of your dad. I know it will be very hard for your mom.
I lay in bed last night (Donnie had already been asleep for about 3 hrs) and I just lay there trying to think of the time when we were "normal" and it seemed like forever ago. I was trying to remember that it had only been 7 years ago that Donnie and our son, Dalynn built our house from the very ground up and how strong and active he was. The endless days that he would spend with our son playing ball, hunting, fishing or just anything, now Dalynn can't even get him to ride to town with him. He won't go fishing or hunting anymore. It is sooo hard grieving the loss of what was.
So your wife has fought for 10 years. Wow. that's along time. Donnie was just diagnosed in Aug. of 2013 but has shown signs for about 2 yrs prior to that.
I don't want to sound cruel and I know that my world will fall apart when he does pass, but my prayer is for him not to suffer and if that means God taking him on now, then so be it. I am already grieving the loss of my husband every single day.
You spoke of your 15 yr old son. Has he been tested?
Does your wife have a good Dr.?
This is such a hard life for everyone involved

Liz
Liz

Decided to delete my post



Edited 4 time(s). Last edit at 03/01/2015 06:18AM by Barb.

Barb....why did you delete your post??? I always really enjoy hearing anything you have to say or your advice.

can you send it to me in a PM?

Liz

No, I deleted my post because I decided I didn't like what I had written, so that is just fine. If I delete something, it means I decided that what I wrote was in poor taste, so just accept a delete as a gift. All is good, I just decided a delete was a better gift to give

In my previous post back in December I shared how Donnie's grandmother passed away from cancer and how hard it was on him and how he went to her house every night for 2 months. She passed on Dec. 26 and he did really well at her funeral.
Well...Donnie's mother had surgery and was diagnosed with Overian cancer Monday. We were at the hospital with her and he had a difficult day all day.
Please pray for him thru this. Idk how much he really retains mentally. I will tell him what is going on with her and in a couple of hours he will ask me the same questions about her and he does this over and over.

Thank you,
Liz

Will do!

Mike

The Dr wrote out an order for Donnie to go to physical therapy for his balance.
Has anyone else did this?
Did it help?
Donnie says he does not want to go. What should I do?

Liz

It doesn't hurt! My daughter who is about 16 years into Juvenile Huntington's Disease at age 32 has a physical therapist who comes to our house twice a week. She can still get around with my assistance. I attribute it to keeping her physically active. Repetitive activity helps keep people with HD functioning. She also plays her computer games for four hours a day. I know that this keeps her mentally alert. It is kind of unheard of for someone with JHD to still be functioning as she does at this stage. Thinking back to my wife who died of HD at age 33, Allison is so much better off. My wife did not have physical therapy (or speech therapy as Allison also has) and did not have anywhere near the acuity that Allison has at this late stage. Unfortunately, so many people with HD are given up on way too soon. So, my advice is to do the PT. The earlier you can start any therapy with HD the better.

thank you Howard.
Yes your daughter has lived a long life considering the HD. I am so thankful for that. What about your wife? That seems like a young age as Donnie is now 44 and has only been diagnosed 2 yrs. What age was your wife diagnosed? what was her CAG count?

Liz

My wife was diagnosed at age 26-27. She was adopted so there was no family history to go by and no reason to suspect HD. CAG counts did not exist back then. The HD gene and CAG count was discovered in 1993 by researchers at Mass General right about the time that my wife died. There was therefore no way to know her CAG count. Adoption medical records were sealed back then and unavailable to us. Doctors at Mass General remembered her birth mother and were finally able to trace my wife back to her. My daughter's CAG count is 60.

Howard,
Wow. I am so sorry. Your wife was so young. Your daughters CAG count is the highest I have ever heard of.
Bless you,
Liz

I went through vestibular and physical therapy early on. Wish I could go back. I don't know if it will help the balance specifically but the physical therapy does give you something to shoot for. If Donnie would go it would be beneficial both physically and mentally in my opinion.

Mike

thank you Mikee,
I ask him and he said "no. he did not want to do that." He has had a very bad week. He has been crying almost every day when I come home for lunch. when I ask him what's wrong, he says he don't know. My heart breaks for him so bad.

Liz

This week has been sooo different from last week. It's just amazing. Last week Donnie wouldn't do anything and cried all week, this week, starting with Sunday he has been in such a different way.....Sunday after church, he rode to N'ville with our son Dalynn, to get a bedroom suite. He even helped Dalynn load and unload it. Mon. and Tues. he has been "with us" those of you who deal with HD will know what that means. His talking and communicating has been better. He has laughed with me and that is something I rarely see him do anymore.
I am so thankful for the good days.

Liz

Liz that's good to hear. It's tough making yourself do things sometime even without HD. Glad he is out and about. Physically it is taxing with activity but when you finish even a small task it still gives me a feeling of accomplishment. I may ache and hurt but a lot of that is probably from NOT being active. I wish I could make myself exercise and walk (back to that drive thing). You may want to pay attention to whether he is more active when others are around. I seem more motivated then personally.

Mike