So, regarding the email I sent last week, I got the response I expected. Along with my husband's brothers and sisters I sent it to his cousin. The only one to respond was his cousin she and on of my husband sisters will take him out to the movies. his cousin is very good on following through. No response from his unemployed brother who lives 10 miles away.

I can understand why this happens. It's really pretty simple.

People can have compassion for a short time for a disease and distress, but not long term.

Cancer victims get a lot of sympathy. People in accidents get a lot of sympathy, but neither for very long. Short term is about all people pay attention to. Long term things are out of the question for most people.

HD is very long term. The same thing happens to old folks that go the NH and get alzhemiers. Same exact things. Nobody asks how they are doing that really want to know. They know the patient is bad and getting worse.

So what can they do? What good does it do? They have already written that person off about 6 months after knowing what happened. One of my wife's friends said she "wanted to remember her as she was" and "she had said goodbye to her the last time she saw her".

Problem was, my wife isn't dead yet, but she was to this "friend". Now that they had different problems and different lives, they aren't friends anymore.

In HD families, the problem may be a little worse. They can see their own mortality and their own fate in the situation. Who wants to know how and when we will die?

People's attention span is short, and people don't want to see other people die or be involved in it.

So it's simple; Life's too short.

Want proof ? How many of you have an aged relative in the NH that you don't see on a regular basis or contact the relatives?

I actually HAD a mother in a NH for Alzhheimer's. I of course knew of her diagnosis far prior to her entrance into a NH - but I NEVER considered her a "write-off" I called her every Sunday before her entry into "assisted living" - and then a Nursing Home.

Once that had occurred - I was no-longer able to do that - but I still visited her as often as possible.

I really can't agree at all that it was for no purpose. My mother may have had Alzheimer's - but that didn't mean she was unconscious!

Unlike many with that disease - she always recognized me by name and by my voice and touch. "You have warm hands!", she would remark.

Just days before her death, she called me by name 4 times - and when I assured her that I was there for as long as she wanted me - she clamped my hand against her mouth like she would never let go. And BELIEVE ME, Mom was never physically affectionate!

so you can't make me believe that visits and expressions of affection are useless!

Just prior to her death - she singled me (and only me, of her 3 remaining children) out for a totally out-of-character show of affection. I could only think that she was making a GREAT effort to tell me goodbye! I can only think that was due to the fact that in my mid-30s I had arbitrarily taken it upon myself to express affection to HER - regardless of her tendencies.

She awarded me by singling me out for affection and a "goodbye" just days before she died.

She still knew me by name and by touch. She submitted to taking her meds (which she'd been more-and-more loudly objecting to!) - because I took the time to be with her, and encourage her, and stroke her cheek, like one does with a baby to encourage them to drink.

So don't even begin to TRY to convince ME that you really can't get through to persons with cognitive disorders!

I know better.......

jl



Edited 1 time(s). Last edit at 01/05/2010 05:35PM by jl.

I don't think anyone suggested that anyone was a write-off or you cannot get through to those with cognitive issues or that showing affection is useless. Nevertheless, for whatever reason, peoples' response is limited and I do not expect that to change in my lifetime.

My dad in the NH might not know me, but that does not change anything. I visit him to make sure he is well cared for and still take him special snacks or whatever to make his day special.

Exactly! If you get even a hint of a smile isnt it worth it. They used to tell us in the unit I worked in if you can take one patient and do there nails or comb their hair at least they would feel contact and maybe deep inside a feeling of relief. Even if it only took 5 minutes.

This is a very good thread. I have had several problems in the past (10 years) about support from family members and the lack of it. I had a very long drawn out battle with my only negative HD brother about 10 years ago, and he finally told me that my level of involvement with our family was totally CHOICE for me. I was thinking that he was the oldest son without HD, and should assume some responsibility with our siblings. That was when he set me straight. He had a very bad time with our father - so bad that he has been not 100% honest with his children - my nephews. I wrote about that in the other thread regarding secrecy..... But anyhow, he told me it was my choice, and he made his choice not to be involved. Once that sunk in, i did not rely or expect anything from him. I felt a weight lifted, and took responsiblility for my OWN actions, and he had to with his. I did what i wanted to do with my siblings, and while i am far from perfect, i know that they enjoyed some of that time before they passed. I have always kept him informed about how they were, and when things got bad, it gave him the opportunity to see which ever one before it actually happened. He got to spend 3 great days with our sister Karen a week before she passed, and he will never forget it. She also had such a positive response to it, and it gave her strength for one more day, one more day.

So i am glad that even after all of these years that he was not involved, he was able to make his peace with both Karen and John. Paul is still with us, and will need attention, and i am doing what i can, as is my choice to do. I love my family to pieces, and i will do what i can, as is my choice. I can't see it any other way.

The only chip i carry is that our -HD brother had not been truthful with his sons, and yes, that pi$$es me off even now. They never knew their aunts and uncle, and it was because of HD that they never knew them. I am a stickler for some kind of loyalty to family and tradition, and you should know your family. period. You don't have to extend a hand, you don't have to call every week. But please, honor the family you have, so that the next generation will know them. There are good things about all of them, and that is what we need to pass down too.

I know that sounds stupid, but for my family, it totally applies.

Much love to you all,

Suzanne

What got me thingking about asking my husband family for some involvement was that I see a counsler and she suggested that I ask for help. Her advice was that people just don't know what is needed and that I should ask for support so I will not get burned out. Well, I realy didn't think his family would help and the majority didn't disappoint me.
Fred spoke of his wife's friend. Let me tell you about my husband and my friend. my husband has a weight lifting set up he used to use. a few years ago this friend asked if my husband didn't need it could he have it. Well a few months ago I called this friend and told him my husband wasn't doing well and he asked, "does he still have the weights?"
I know this sounds petty, but my husband has his family's home movies. In the future I plan to trash them. It will make me feel better, I know it's petty, but I'm okay with that.



Edited 3 time(s). Last edit at 01/05/2010 10:43PM by Debra.

Some of these stories are amazing. Debra, yes, trash the weights! I will come and help you!!!!

Me too I will come help you trash the weights!

Well Suzanne, you make some good points.

Everyone's experience of one's parent is different, and must be respected.

My experience of my dad was that he propositioned me. It didn't happen to either of my sibs. As a result, I was not comfortable showing him any affection until I knew he was near death. Once I realized that was the case - I forced myself (and I mean FORCED myself!) to hug him and tell him I loved him. I did this because I'm a strong believer that one is responsible for one's own karma - and that if one doesn't forgive a loved-one before his death, one will forever regret it.

Mind you, "forgiving" does not mean "condoning". It merely means letting it go.....

jl

Suzanne. I am so glad your brother soent time with Karen and John before they died. I amd so glad for all of your siblings that you have been there for them. Thank you for your beautiful posting.

JL, that took courage, and I admire you for doing that

I think that short term, people can be compasionate when they can see a resolution to it. But attention spans are short.

For some acute disease, the compasion is "charity". But for something long term, other people can consider it "welfare", if that's a good analogy.

They have their own problems, of which they consider "the worst thing that can happen". When they see this, it makes their problems seem meaningless. They can't compehend it so they dismiss it.

In my opinon, very few people can deal with long term health issues like this with a loved one. Very few. They just aren't wired for it.

thats reaally sad. maybe they dont want him to think that they feel sorry for him. sometimes people think its better you act the same, when you really do need a little comfort

Fred, I think you should speak for yourself, and not tend to generalize.

And is your differentiation between "charity" and "welfare" clear? Well, not to me!

Maybe you can explain.

jl

Nice thread. But I think that there is another reason that people do not offer to help. FEAR! If I lived two doors down from you I would probably not offer to stay with your wife or husband. I would be too afraid!!! I could cook special foods and I could visit, but would be afraid that I was not up to the task of being the caregiver and giving you some time off. What is something happened? And I am a caregiver!

Both of Tony?s brothers live near each other but about a six hour drive from us. One is in the advanced stage of HD and the non HD brother spends a lot of time helping his caregiver wife. He calls and drives up to see us a couple of times a year.

My greatest help is our sons. They are almost as much Tony?s caregiver as I am. Our older son and I were arguing about his caregiver roll yesterday. Both live in the old, revitalized part of town and love it. There are interesting shops and restaurants within walking distance from their houses. They have lived in that part of town since they left home years ago. But it is a 30 minute drive across town to our house, and now my son, Jason, is looking for a house to buy in our neighborhood. I think that is too much for him to do. He argues that he wants to be closer so that if I need help in a hurry, he can get here fast. I argue that if I need help fast I will dial 911.

I had two days off duty as a caregiver recently. Jason was going to Texas on a hobby related trip. He invited his brother and dad to go with him. They said it was a manly trip, no women allowed. They left early Saturday and got back late Sunday. I wasted all day Saturday. I kept stopping what I was doing to go into Tony?s television room to check on him. I would feel so foolish a second later when I realized he was not home. It was automatic because of the years that I have been doing it.

Maggie,
I am so glad you had the weekend off.

The house was SO quiet.

Maggie, glad you have your sons in the same town and they are so helpful to your both.

Fred, I feel what you said is very true and makes a lot of sense. Typically, people don't want to continue to look at a painful situation when they have a choice to eventually look away. Problem is, being a caregiver we are not usually given that choice. Outsiders are given the choice to look away and I can't blame them.

My brother had a long term friend of many years who came down with cancer. My brother and his wife took them into their home when there was no family around and they saw to it that he was cared for in their home until he died (about 2 years). Now, I really see what that meant to be a "friend" to someone.

With all due respect (and that's sincere!) caregivers have more of a "choice" than PHDs do.

My husband left me when he found out I was at risk.

I cannot "divorce" myself - so I'm irrecovably STUCK with HD.......

jl