Carlaj,

At our church, a group of men takes turns on Friday taking one of our members, who is disabled with Parkinson's, out to lunch. He and his wife both appreciate the break. If you belong to a church, this might work. If you don't belong to a church, you might find an active church that is willing to help.One or two men might be willing to stay with your husband or take him out for an hour or so weekly so you get a break. Quaker Meetings are very socially conscious and other churches are also. My husband initially went with amnother man to help our friend but now feels comfortable going alone.

what is the "respite" program?

Fred Wrote:
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> what is the "respite" program?

A respite program is designed for the caregiver. To give them a "respite" from taking care of a disabled person. It literally translates to "a short break."

Many locales have organizations of loving, caring people who are willing to come in and take care of your loved one while you take a break. They are often paid for by insurance or the government.

Dad has respite visits 3 times a week from 1pm-4:30pm . It is a big help . They pay ONLY 100 dollars a month for this government help . Most people can acquire it for free if their income is at a lower range . db

What department of the government are you going to? What's the program called?

And who are these people that come in from 1-4:30? Where do they work and what kind of background do they have?

Fred Wrote:
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> What department of the government are you going
> to? What's the program called?
>
> And who are these people that come in from 1-4:30?
> Where do they work and what kind of background do
> they have?

The local one we use is Semcil (http://www.semcil.org/). This one is just for Southeastern MN. They get much of their funding directly from The State of Minnesota's Department of Human services. Your state should have a similiar department. Perhaps start there and they can recommend local affiliated organisations.

No, I never found such an organization in our area. I did find where I could hire people on a un-verified list that came from the doctors and nursing homes.

There were a few horror stories around about hiring from that list, like the person stealing from the family or worse. So I didn't do that.

I found NO government funding of such a program in TN. That's why I find it interesting. At the time, I couldn't qualify for that either because of income.

Well as you know I live in one of the Atlantic provinces of Canada . The respite is a government run health program . Since I also worked for one of the largest Home-care organizations contracted by the Provence I am in a good position to know all the pros and cons of the program provided . The big pro for us , is this , this program with its help , allows my Dad and our family , to keep Mom home for the longest possible time frame . It gives Dad a well needed brake from Mom . It gives Mom pc 2 times a week . That pc can be increased anytime we want . Yes , I know of those who have had things stolen from their home , but , things get stolen from most workplaces . The majority of homes will and never have had any thing stolen . There is away to deal with abuses of any kind that a client might experience in the home-care program .It is far from perfect , but , so are all other avenues of care for our loved ones .my best. db

At what point will you consider full time NH care? My wife in a NH now.. I based that decision on the amount of ill affects on the kids and on me with respect to them. Kids are resilient.. that doesn't mean they should be forced to be that way if there are alternatives. I was talking about this to my now 19 yr old son .. my wife went to the NH 4 years ago when he was 15 and my other son was 9..he is now 13.

You can take this for what's it's worth. Men that decide to stay with their spouse in the first place very often make their staying their identity to the exclusion of most everything else. I think it's a man thing.. being provider and all that. We also get a lot of encouragement to keep doing what we are doing because middle aged men who care for a sick wife... and kids... get tons of credit for being soooo extraordinary. I still all the time get praised out the butt just for visiting all the time. I am sick of it kinda.. I also found what my biggest deficit in this situation was and is, is my lack of maternal instinct. I can emulate it.. but it's learned and not just there. So saying a child can be resilient translates in man speak to "suck it up, it builds character."

I also think women make on the whole much more reasonable decisions because they are and always will be a mother first. I think that is a correct thing to accept as true. That includes realizing that their mothering is suffering too much for a spouse and the kids deserve, at the very leas,t one good solid parent. If hubby is is hurting the kids in too many ways and the mother is also that cares for for the kids.. they will choose in favor of the children.

I also think that having HD does not abdicate the person with Huntington's disease for contributing to the welfare of the children they brought into the world. Being present 24/7 is not the only criteria to judging that. Having a parent in the home with HD may be the the kids biggest problem to their wellbeing and the person with Huntington's disease might only be able to contribute by not being in the home any more. That may not be a wilful choice for the HD parent, and a choice left up to the caregiver spouse to make for them. But it's still an obligation of the HD parent to sacrifice for the children's welfare whether they can see it at the time or not. It's not up to the kids to sacrifice for the sick parent.

I am not saying this applies to you specifically. This is a view point that I didn't even come up with myself. The HD social worker at our state conference brought up this "man thing" issue. It's something that did apply to me... I didn't realize that it was more systemic to more people than just me. He said..while addressing the entire group ... that he was seeing this over and over. I have made some of the speculations myself as to why this is.

I kept Teresa at home way longer than she would have kept me at home, should it have been the reverse situation. She would have protected the kids first. I would have expected her to do that. She would have been a great mother because she was one before she got sick. Once I allowed for the fact she was doing harm to the kids in a lot of different ways.. and my own parenting was deteriorating as well trying to keep up with her illness, the decision was sort of evident. Not to me.. to others. My kids are so much better off now. I was not right at all keeping Teresa with them as along as I did. Or with me. They see her as often or not as they see as making them comfortable. They do not go as often as I do to visit. That tells me that everyday with Teresa was too much for them. They still do visit regularly..so they still love and care about her. Teresa knows that. She knows I do too. Everyone else knows the same... I didn't turn into a villain for the decision. Not one person questioned me about it. I worry about husband caregivers... we get treated differently and tend to be all or or nothing in the process which probably neither is correct.

Any way if there is any nugget in there that you can use.. feel free.

In other words, it may be doing more harm than good by keeping them at home? I have to agree that at some point, even the most well meaning home care can't match the 24/7 care of the patient.

Dad, will consider NH care , when he feels , he can no longer accomplish taking care of Mom in the way he wants . My Dad finds comfort and enjoyment in taking care of Mom . But he has talked to us about what would make him take advantage of a NH for Mom . If his arthritis got bad and stayed bad ; if his health changed ; if Moms health changed .....
i don't know if I can explain well enough my thoughts that were learned from my Dad and Mom , on Individuality and marriage . Dad does not take care of Mom for praise , he never has . His identity , has Mom in it . He loves that they were able to wrap their lives together . Dad has many facets that make up his identity . He is a carpenter still; painter ; cook ; good neighbor ; good grand dad ; good great grand dad ; financial advisor ; he has helped young ones with turmoil in their lives . He is still doing those things in a smaller measure . My Dad's days and weeks and months are filled with activity . He most days loves taking mom out for breakfast . Many a time they go out for supper . Mom and Dad both just keep going . That could stop tomorrow . But , I assure you Dad is contented with the way he is living his life . He has a strong relationship with God and he believes his and Moms happiness is supported by His good favours . But , as I have said in times past NH options are always an option if it becomes a necessity . All my best thoughts . db

Yep.. but the long windedness is necessary because there is associated guilt. That has to be accounted for by stating the thinking behind the point.. That wasn't even counting whether caregiving is suffering too and which in my case it was.. everything was substandard. It all snowballs, just slowly, so you adapt by having lots of time to justify how things are as being good rather than bad. Someone who is fine one day then has a stroke is very likely to placed in care very quickly because that stark difference between what's best and acceptable is very stark because of the time involved to adjust. It's just a matter of figuring your priorities in advance if you can and then sticking pretty close to the plan. I had no priorities between kids and my wife and myself... I was just gonna be superman I guess.. I also bit that from the casual observers viewpoint that I was being Mr. Wonderful. The well meaning compliments were enabling poor decision making. They didn't consider if the kids were miserable.. whether T was getting acceptable care.. whether I was off my rocker half the time. To them I was just being a good person to try.. no matter the outcome. Looking back I should never have put too much stock in those compliments. They sort of convinced me that half of everything was better than it was. Half of me as a dad parenting, with no mom parenting at all was no good. That is 25% of parenting that a child deserves. Without T needing my attention I could do my 50% plus have extra to make up for at least some of what she would have done. I am not the mother too... just an amped up dad. Like you are I am sure Fred.

Thank you for your insight Eric.

Through all of this I've tried to put the children first. But I'm definately a guy and have waited too long make some of the changes. I'm not sure if it was clear in the initial message. My wife does not live with us now. We visit her and she visits us. Mom lives far enough away that it's not an everyday thing. So the kids do have decent stretches of "Normalness." I've been fortunate to have very nuturing nannies for the kids as well. Someone to try dresses on with, do braids, etc. Mother-Daughter stuff.

Were it not for my mother caring for my wife the way she does now, she would have been in a NH 6 months ago. In hindsight, 12 months ago would probably have been more appropriate for the change in care. Even now we are discussing whether my mother can continue to do what she is doing.

A year ago I struggled with the idea of a nursing home, but now that I've seen the affect HD has on everyone, I really understand the need for it. It's not a matter of giving up and putting our loved ones in a NH, it's about loving them enough to put them where they are safe. It's about loving your children enough to protect them from the horrible things in life.

I probably misunderstood.. Not fair to your mother either.. even if she loves your wife to death. That's my knee jerk on that.. I have been offline for a while and way behind on reading stuff. So I am hanging out here being the idiot husband all by myself.. That's cool..I gave into that a long time ago anyway. Maybe someone else can reflect on the post then... even wives who are right thinking but just not quite convinced they are right thinking.

I just got off the phone with Mom to see how things were going. We talk daily now because I know the time is coming fast when she will need to go to the NH. I really resisted the idea of my mother helping out in all this..but she wouldn't take no for an answer. She's more stubborn than me, and I'm sure that I will eventually have to make her let go.

Speaking of waiting too long. I definately waited to long to connect with other people that are going through HD. Until this forum I had never spoken with anyone even remotely affected by HD. 4 years in the wilderness all by myself. Silly Men.

You did allright, Yahkin. When you get right down to it, there are not many logical conclusions to this progression.