Pat,

you may have already covered it but i am so interested in hearing how you and your current husband met and came to be married. i understand that his ex and your ex both have HD and i think it is so special that you have found each other.

i think it is so special that each of you know what the other is going through/has gone through and goes through each day knowing that your children are at-risk.

i am so glad you have found each other. my FIL who cared for my HD MIL for years and years was so special. after my MIL had been in the nursing home for about 7 years, he found someone. They were so sweet with each other, it was absolutely precious. it broke my heart that he was only able to share this relationship for about 9 months, he died with cancer.

i just look for bright spots in HD, and Lord knows there isn't many, but it sure sounds like you and your husband are one.

best wishes to you and your family.

OH BOY, where to begin? Well, Joe and I were already on the way to divorce for many reasons but still living together and looking for an inexpensive divorce when Steve and I met on the old MGH chat room. I found a way on for a cheap divorce on legalzoom.com, ( I don't think they do it anymore tho) it was only for uncontested divorce.

Steve and his wife were going thru a lot more contentions than we were and living separate but together also. They also had filed for divorce by the time Steve and I realized we were "meant to be" I made plans to move from NJ to Michigan as Steve was due to retire as a firefighter/paramedic in about 8 years and Joe agreed to go with me so I could continue to take care of him in some compacity. His Mom however put an end to that and told him she'd disown him if he moved with me so he stayed and got his own apartment about a block away from her. I moved up to Michigan and kept in touch with Joe and got a small apartment 2 floors under Steve's apartment until we married about a 1 1/2 later.

Kim got the house in the divorce which was fine however we knew it would not last. She never paid any mortgages and went online and bought "stuff" and her cat multiplied to 50 and her POA (sil) did NOTHING for her, we called every agency in the twp, county and state and they all said, she can dress herself and feed herself so did nothing. ( Keep in mind that Kim at one time was a Medical Biller, and volunteer for Contact and helped people who were suicidal, and never would she have wanted to live in this way) When the house went into foreclosure and there were no plans for her to go anywhere, I KEPT calling adult protection agency and they kept going and telling us there was nothing they could do. Finally we heard our Governor (election year) was going to be down the street from us in a small park. I typed up an essay I called, "What would you do if it was your mother, sister or friend", with pictures we took of the cat feces, urine covered house. I was able to hand it to her with a VERY short talk about HD, hug her and within 3 days, she made calls and said, TAKE CARE OF THIS... Kim was then removed from the house, taken to the mental hospital, the house was condemned, the cats removed. Kim was eventually put in an Adult Foster Care home that was beautiful but they knew NOTHING about HD. She would call us crying and beg us to come get her and she spent many nights at our house. When they held her in her room by holding her door closed I got in my car and got her and she never went back. She at this time had a state appointed guardian and he went to court for us and the judge allowed her to move in with us.

She's been here since October. Some people think it's strange, some people think it's mean to her. Some people have never lived out of the box like we do. It works for us. She has no more outburst, I'm no saint and neither is Steve, I can't honestly say we could do it if she was the same as she was 8 years ago. No one brings up the house, I know she still thinks she could still live there even though it was days from her being put on the sidewalk. I think for all she's been thru she's learned to say yes to meds and they work for her, and we've learned how to choose battles. I feel it's a blessing for all, their (I'm NaNa) grandson is here a LOT and she'd never be able to see him otherwise, she sees her son daily, and we get along well. Her family never sees her never calls, never did when she was at the group home or her own home either, that's one of the reasons she got in so much trouble. They were Mr and Madame President of the state HDSA chapter for years and years so any wonder I'm a tad bitter about the hdsa's? Their part in this is another whole post and I need my meds lined up to get thru it!

Joe is now in a NH, his Mom didn't do so well caring for him after all, one day our boys and his mom went over there to talk to to him about going into a NH and and he kept falling down and made no sense. My youngest checked his meds and there were 4 or 5 days missing and his mom said she had just filled it the night before and she didn't seem surprised. My son had to say, AHHHHHHH GRANDMOM, we HAVE to call the ambulance!!!!! He went to hospital and never left for several months till a bed opened in a NH, thank GOODNESS. It's a wonderful home, I've been there several times and the staff really fuss over him. He doesn't like to leave his room, he's very much a home body, but we can usually talk him into going for a ride around the floor for a few minutes. He's tube fed and gets fevers and is advancing much faster than Kim. Of my friends, Marsha and Steve and I, our spouses were pretty much the same when we all met, and Joe has advanced much faster, Kim and Marsha's Joe are still about the same. Strange isn't it? My Joe has a CAG of 42, Kim would never tell us hers.

Steve and I do have a great marriage and yes we understand what we are each going thru. He understands when he hears me talk to Joe on the phone and I say to him, " Okay, talk later, I love you", and go see him when I'm visiting our boys. And Steve and Kim go lots of places together without me when I just plain don't feel like going. out to lunch, for a ride, we are family with a history and kids and what can I say?

I know one thing I can say, we are NOT the ONLY people doing this. We have had LOTS of emails from other people doing the same thing and they just remain silent, I'm not the silent type lol... so no, just take it from me that we are not the only ones doing this and are not so very special!

wow Rowan im so glad you asked the question... thats an amazing story. I know your saying others are doing it mrspatwolf, but its the first ive ever read of it happening and it working out so well! (after years of hard work by the sounds of it, and continual hard work im sure)

I hope that others , through your speaking out and not being silent, feel more comfortable to share their stories.

I learnt alot from your sharing...and about living "out of the box"

Thanks for sharing

Thanks for sharing your story.

wow, pat--
Thanks for sharing the story, i have always wondered and thought how wonderful it was the 2 of you met!!

DCB
*Living for today*

So far, I've been to three weddings where both parties were former caregivers. I think that being part of a marriage where your spouse has HD is so all consuming that after it's over, it's hard to really relate to someone who hasn't been through it, at least not as closely as you need to do for a marriage to work. Plus, you've likely become very isolated when you aren't going to work and you're not entertaining and haven't been free to accept casual invitations for golf, lunch, shopping, etc. from friends. How else do you know but people from your support group? And if there are children at risk, you are aware that you might be doing it again and you wonder if a new spouse who isn't from an HD family can handle that stress.



Edited 1 time(s). Last edit at 08/02/2008 07:20AM by Marsha.

mrspatwolf,

thank you so much for sharing, i have tears in my eyes! i am so happy for you and your husband ( and for the other couples that you and marsha talk about.)

how great and hopeful to know that there can be life in spite of HD.

thank you so much for sharing!!! your story really gives hope.

i love your "living outside the box" quote.

looking back at my FIL/MIL; he was such an awesome caregiver...but his "marriage" was actually over 15 or more years before she died, he could have definitely lived outside the box if given the right circumstances but he didn't get the opportunity, i am so sad that he didn't.

again, thank you.

and thank YOU for your kind words!

It's a wonderful story, Pat. I think that the word "family" can encompass a lot of different situations, if you're willing to open your mind to them......





Edited 1 time(s). Last edit at 08/02/2008 06PM by JL.

I loved the story of your family. It brought a tear to my eye. I am so happy it works for you all.

My wife's dad married a woman after he divorced my wife's mom. They had a child. After he was in the nursing home, they divorced.

My wife's dad's sister's husband (boy this gets difficult to explain without names) married the second wife.

Together they raised the kids they had with the HD parents.

I don't think it's uncommon for people with similar tragety to marry. I bet it isn't as strange or unusual as people think.

Hey!! Maybe Fred and Eric could get married!!
(just kidding dont shoot me)

Nah, I hear that Eric eats crackers in bed.

And Fred probably eats nails in bed........

Michelle Wrote:
-------------------------------------------------------
> Hey!! Maybe Fred and Eric could get married!!
> (just kidding dont shoot me)

LOL LOL!!!! I don't think fred and eric would make a very good couple lol lol lol !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!