Hey everyone. I am not new to this group, but it has been a while since i joined in any conversations. I have always respected the opinions and knowledge of everyone here, and so I have come to you for advice.

My older sister is 36 and married with an 8 year old daughter, and currently in a nursing home pretty close to the family (only about 5 miles away). She has been there for almost a year, and it kills me to see how few people, including relatives, actually visit her. By this, i mean, only a select few have been there more than twice, most have turned their backs and have not seen her at all. Do you guys experience this and how do you control your anger? I have so much animosity towards family members who have just turned the other cheek on a woman who did so much for them in the past, and it hurts to feel so torn. Any suggestions? Thank you

I have the same situation with my daughter who is 27 and has been in a nursing home for 31/2 years.Besides me, the only other person who visits her regularly is my son who lives 200 miles away and tries to see her each month. Her grandmother (my late wife's mother) lives 1200 miles away, is 86 years old but does make it up to visit her once or twice a year. Her other grandmother (my mother) lives in the same state and has not visited or contacted her in three years. She has told people that she is embarrassed by my daughter and has kept everybody away. Yet she has no problem jumping on a plane and flying 3000 miles to visit my sister and her children. I resent my mother, sister, and other relatives who ignore my daughter. Last Christmas she sent gifts to these people in hope that it would spur them to at least send her a card. Only one even sent a thank you note. These people are impressed by status and money and my daughter can't offer them either. They have angered and upset me and have made coping with my daughter's HD and my own illness (MG) so much harder. In the past, I was the one who everyone turned to for help and now nobody will acknowledge us. How to cope? I guess writing this is helping to "let off steam." My son tells me to forget about it but that does not seem to be possible. All I can do is carry on and do the best for my daughter that I can. I feel for you. The problem only gets worse as the years go by.



Edited 2 time(s). Last edit at 03/20/2010 10:53AM by howard.

Shout at them.

[www.hdyo.org]

Hi
Where is the husband ?

I too experience this with my ex, Joe who is end stage and in a NH. His Mom goes when she can and our 2 boys. I go or try to every 3 months or so, but he's in Pa and I'm in Michigan, and since I had to go to Florida, for the death of my Dad, I have no $$$ now, so I don't know when I'll be back.. When my boys go they always put their phones on speaker and I talk to him.

Joe's brother is POA and NEVER EVER sees him. I took care of my anger with him, before I moved by having my say with him and he acutally stayed on the phone to hear me out and it was NOT pleasant, so maybe he felt he deserved every word? Didn't change anything tho. Even my mother tells me about all the cards she has gotten but never sent. I don't get it either.

I'm afraid that's just how it is with most people. Not everyone can do the visits for a variety of reasons.

One reason is they don't know what to say, so they don't say anything. Another is that it may depress them (since they are also at risk) and make them face their own mortality. It's easier to turn away than to face the issue.

You can't be angry. That's just the way of the world. I consider it a way to sort out the good from the bad. Kinda makes it plain, doesn't it?

My wife's mom lived only 10 miles from her daughter in the NH. She lives 400 miles away from my wife. In the 8 years her oldest daughter was in the NH, she visited once, early on. She never visited any other time.

Her other sister (that doesn't have HD) never visited either one. Friends considered my wife dead when she went in, and only one out of the entire group of friends visited in the 6 years my wife has been in the NH. That's out of the dozens she had.

And I think she stayed 20 or 30 minutes.

People just can't deal with it.

Fred- I don't know if its that they can't deal with it as much as they won't deal with it. The people I'm referring to are so consumed with themselves that they don't even think of caring about my daughter. None of them are at risk for HD so that is not the reason. They could at least send a card at Christmas and on her birthday. They don't have to see her and could pretend that they care.The last time I talked to any of them they never even asked how she was. Yet when I asked how they were doing they went on and on about how tough they have it. (even though their worries paled when compared to HD) People are on this site because they do care. The people who refuse to visit would never get on a site like this. You are so right when you say its the way of the world, but I will still be angry. So often my daughter has asked why none of them care, and I don't have a good answer. Matt, you suggested shouting at them. Unfortunately they have selective hearing. I still will continue to take every opportunity to let them know what I think.They don't hear me, but at least I feel better for having said it.

It's hard to tell Can't from Won't. To me it's a differnce that makes no differnce.

This board has had this conversation before. It's not exclusive to HD. It takes on a lot of illnesses and situations.

I mentioned in another thread that people can have compassion for people for a limited time. After that, their patients runs out. Compassion turns to "charity", and then the "charity" turns to "welfare". And what I mean by that is that once or twice we can give a little. But when the end isn't near, and the giving still has to continue, people lose interest and move on to other things.

(Sorta like Haiti)

People don't want to watch this happen either. They can't do anything about it, and anything they say is weak in comparison to what's going on. Anybody with a grandmother in the NH with alzhemiers has the same issue. What can you say? What can you do? Does it do any good? Etc.

I can't blame them. To me it's just human nature.

Thank you all for your opinions. We went through a similar situation when my father first went into a NH as well, but I had hoped this would be different. Dad was strong and coped better. I suppose a lot of his strength had to do with him not knowing his future.; he was the first in the family ever diagnosed with HD. I was about 14 at the time. I just dont understand how people can just turn their backs on someone so amazing. In a way, it's comforting to know that we aren't alone in this, and that's why these sites are so important.

I want so badly to shout and scream and try to make them understand, but if they don't care now, why will they then? For the most part, the family members i refer to are not in danger of testing for HD..they are my mom's side of the family, and they all live within 15 minutes of the home, which makes me even more angry. My brother in law, who visits a few times a week, put her in this home bc it's so close, in hopes that people would visit her more often. Unfortunately, it didn't work, and I feel torn up inside.

My sister knows who's there, and that's hurts the most. She knows who is coming and who isn't, and for her sake, I wish she could see more familiar faces. My mom, bro in law, and i can't be there all the time, so it would be nice to have some support.

Howard,
I am so sorry to hear about your daughter. She is so lucky to have such a supportive, loving father as you. I really give you a lot of credit for sticking by her and standing up for her as you have. It takes a strong person to speak for her and to put your anger aside for her well being. Thank you so much for your input. It really means a lot to know I'm not alone.

Here is an article (by Marsha Miller) that I thought was very-well written, about the reasons people act the way they do....


[www.hdac.org]

well said, Marsha, well said!

I think that, "It may be that they will come around eventually and reconcile with their mother. But right now, it very likely seems to them that you're telling them that they don't have a right to feel angry, that they shouldn't feel bad that they didn't get what they needed from their mother, that they have to forgive her - in short that they are not entitled to their feelings. They are. When we are young it can be hard to forgive because it seems like it means minimizing that we were wronged when we need to feel validated." had special resonance for me!

If any one ever tries to make you feel guilty - just igore them. It's YOUR choice! No-one can FORCE you to feel guilty! I just recite to myself, "Never let any one ELSE define you! One thing that you'll ALWAYS do better than anyone else - is to know who you are"


As for forgiveness! Forgiveness does NOT mean condonement (which oft-times is way too much to expect.) - it's a matter of letting go!

"This person has done things I can never forgive. Doesn't matter! I will never get an apology! So what I CHOOSE to do is decide, "I simply refuse to let this person RULE my life, anymore!"

jl

But as for: "But in fact, Leigh simply didn?t ?get it.? Because Barbara?s husband was jealous of her friends, they had always met to socialize elsewhere. "

Well, that's certainly not limited to HD! I had a husband JUST like that - and he wasn't even AT RISK for HD!

He was simply a control-freak!

jl

Hello PhoebesMom,

I have to say that my family has gone through the same thing. Some people will do it, some will not. I used to get angry at that, but i found that it just was wasting my time - it doesn't change anyone, but it does make you bitter. I was told by one of my brothers that it was my choice to be involved with my HD family, and to not expect it of him. It was that moment i realized we all have choices.... and it was that moment that the anger went away. I knew that i would be there for my family, and i have stuck by that ever since. While he has had repurcussions about non-involvement over the years, i have no regrets. I love them all, and am here for him too, and i will just do what i need to do. It did get to the point that my family with HD knew and trusted that i would always be there, and they actually were and are ok with those that stop once a year, or even less, because they still know they have a constant in their lives. I am very honored to be that for them.

Wishing you lots of love and peace,

Suzanne

Ugh, rough issue. I say it's all or most of the below...
1) People are nervous/don't know how to react
2) People think ignoring the person (subconsciously) ignores the HD issue
(aka, bury head in sand)
3) They may be at risk and scared to visit and see the future (I have this issue with my dad)
4) Reminders of the past (good, or bad)
6) They are selfish jerks who need to see the other side of the issue ans suck it up.

I am totally in a lot of those situations. My 7 uncles (dad is one of 8 with HD I am gene pos) never go, I was pissy about it until one confessed he was so depressed seeing his brother go like his dad.

I feel your pain, esp. as someone who will probably be in a nursing home one day, I hope I am well enough to remember it is probably not intentional.


~ Laura Q.