G,

The arena of dealing with all these cognitive features of HD (or however one chooses to charcterize them) is configured between JFB's advice that "EVERY disagreement will be a battle, stand your ground and lose or disregard, change and survive...there is no WIN" and Marsha's question,"One or two adjustments, fine, they are little things, but where does it turn into having your life controlled by someone else - three, a dozen, two dozen?"

In the early 1700s Irish author Jonathan Swift wrote: ?It is useless to attempt to reason a man out of a thing he was never reasoned into?. I suspect ol' Jon wasn't talking about folks with HD, but, given the cognitive challenges that HD brings, it's even more real.

There are obvious considerations of personal safety and protecting chlidren to weigh. Beyond those, Barb's on track too. Is it worth a peepee match over the racket from the open window? As annoying as it is.

One other would have been to let it bang away (or even open another window!). I'd take the risk/make the bet that eventually (because it's difficult for him to switch topics) it would drive him equally nuts (sensory overload) and he'd be demanding (short fuse) that you shut the windows. Being the wonderful SIL that you are, you could beg forgiveness and shut the window. It's easier to "play mind games" with somewhat predictable neurologic features than with more character/personality based things!

Lest you drive yourself bonkers, try to find any humorous solace in this old joke.
Q: Why do people bang their heads against walls?
A: It feels so good when you stop.

As for paper clips, "Aaaaarrrggghhhhhhhh!"

Hang in there!

Jimmy

some battles you don't even know you made a stand till it is too late. You then have to be able to surpress the incoming and the escallation changes the subject from the original. the only good outcome then is the pHD can forget the incident, before you even have time to calm down. (be prepared, such escallations may result in property damage and physical injuries)

As J Pollard has also added, the concessions made If you want to keep the peace gradually grow untill you become engrained with the same idosychrosis.

For example, when I park the car, I get out hold up a ribbon so the wife can see the wind direction, get back in and reposition the car to suite her. I'm hoping I can leaarn what she wants and do it "right" the first time and advoid that battle too.

The question of a peepee match over a window and whether it is worth it is.... maybe. In the NH environment the answer is usually not. At home it is different. While we are caregivers at home we are not "staff". We are husbands and wives or children and parents. The dynamics are simply are not the same. We don't get days off. There is no break room. No paid vacations. On top of that there is personal history of years of behaviors and interactions that may have nothing to do with HD. There is intimate history between family members that we have with each other where "button pushing" happens. There is just so much difference between living with HD and at home with family members and caring for an HD patient in the NH environment that sometimes the professional advice just is totally impractical. It is totally appropriate in a nursing environment. It is much more easily implemented in such an environment where staff has backup along with a certain authoritative standing with the resident that as a family member one doesn't have.

The reason I point this out is that in a perfect world we at home would love to create the perfect environment. We seldom do or can. To hear how to implement this or that strategy sounds so easy but in total combination is just not doable at home. There is one person, with one income, too little rest and too much familiarity to achieve what is that "perfect" environment. It's a staff of one. NH's always scream about under staffing. Yes they, even at the lowest point, don't work the caregiver 24/7. They don't bring their kids to work. They don't deal with bills in the residents room or cook their meal...take the resident to buy groceries. If a failed attempt at correcting behavior with a resident fails with one staffer, a second and third can march in behind that one and try again. But not at home.

To hear professional advice it sounds so easy. Talk in a metered tone... create a comfortable routine.... and all the rest. When we at home can't achieve it it feels like we are inadequate. The fact is...sometimes we have to blow a gasket. It's not a nursing environment. It's our home and we are not staff... and we can't behave like staff all the time. And yes, the advice is from professionals is right... and I seldom disagree with the recommendations in theory. But an at home caregiver is not a paid nurse... not a dietitian... not a launderer. We are still primarily family members and the house has to function like a home. Other people in the home have to be accommodated as well as the sufferer. Or the car in this case. So in exchange for no vacations.. no pay... no training... three shifts... all the responsibilities of caregiver plus the other family roles we fulfill.... a peepee match is totally our prerogative. And sometimes it feels good... win or lose. HD is not a shield for every behavior they exhibit nor are we family member going to let every behavior go unchallenged. We can't. Simple as that. Understanding and compassion has limits and when on those given days they fail us... too damn bad. As long as we don't over indulge our frustrations ... an occasional outburst of our own is perfectly acceptable and usually when they occur is needed.

I met a PHD (maybe late mid-stage) - who had a caregiver who WAS hired for the task. She WAS the dietician, the shopper & the resident caregiver.

Why is the same not available to support (and give a break to) family caregivers?

I realize that there is the issue of pay - but why couldn't these services be subsidized or totally paid for?

Just an idea.

Certainly such in-home support would be less expensive than a NH!

That said - I readily acknowledge that there are limitations. The others in the home certainly have a right to a life of their own - and if the PHD's presence precludes that - or if the PHD's presence
presents a danger - then it's time to pursue other options. Without a doubt!

I quite honestly never intend to need a NH. But ironically, Eric strongly objects to MY personal solution for preventing that!



Edited 2 time(s). Last edit at 09/21/2007 08:54AM by JL.

I always try to remember something my husband with HD said many years ago - "I didn't ask for this illness". A counselor also said to me once that when a person with HD does things such as you were explaining - that it is not the person behind those actions but the HD behind those actions which makes sense. It is harder to deal with because many times the person with HD doesn't realize how they really are and they cannot help it. Other times if you question the HD person about their actions, possibly something they did negatively, they will
sometimes admit they realize and they feel bad about it. Most the time they just cannot help it.

I have learned most these things living with my husband. I also try to step back and realize what they must be going through although I probably really have no idea as I am not in their shoes. When I do this I become a little more understanding which is good. That being said, yes I have become angry enough to say things I was sorry for later. That is called being human. I just try harder next time.
That doesn't mean a person with HD or any other illness should be allowed to cause physical harm or mental abuse. That also being said there are people without illnesses who are capable of physical and mental abuse.

Medications can be a source of great help - the correct medication with the correct dosage. If you can get your FIL to trial medications that could make him a very different person. A couple helpful ones we have found are xyprexa and clonazepam - very minimal dosages are very helpful for some people. It can mean a better life for those with the illness and those who love that person.

I hope you can find something that will help. As many have said, some things you just have to let go of if they are not important but if it comes to abuse or harm something needs to be done and there are medications that can benefit many for the sake of all involved.

Eric,

Was there something in what I wrote that merits this comparative nursing home, it's-so-different stuff? Cause if there is tell me what it is. Otherwise it sounds kind of personal. Is it? I've grown accustomed to feeling like one of the bunch here even though I draw a paycheck and go home at night.

Jimmy

I dont think it was personal to you Jimmy, i didnt see it that way. Not trying to think or speak for eric, but the way i saw it was just personal venting and frustration on how hard it is to be a caregiver sometimes. I think it was just pure frustration, everyone feels that sometimes, must be very hard. I don't know if i could do the caregiver role, and if i did have to, i don't know if i would be strong enough. Your post was good jimmy, and you are one of the bunch here, and Eric's post was good too. Just your post showed an intelectual point of view of how things could be done, and i think Erics post showed the raw emotions that can come with caregiving. Neither post discredits the other, they each have their own truth. I appreciated your post Jimmy...and Erics post kinda sucked the wind out of me a bit, and made me realize just how hard being a caregiver is at times, and how sometimes just have to vent.

No Jimmy it's not personal. I actually said your advice is right...it's totally right. And not just your advice. Just about every manual I have have read is right too. The problem is that the structured setting is missing to implement some of it at home. There is no guide instructions that deal with HD and a crying baby with the flu. Nor with HD and soft symptom promiscuity. No mention of what to do when at church your partner is screaming that you screwed a woman there who just said hello. Or what to do other than barricade a bedroom door if your husband wants sex in an unhealthy way or simply can't take no for an answer. How to stop a neighbors dog from barking.... what can or can't be watched on tv. It doesn't tell us how to have a child's birthday party when one of the child's friend's parents is suddenly loathed and everyone will be there in 10 minutes. These situations are constant and unyeilding. Every at home caregiver knows it. We live it now...often have in the past and if there are children will have to relive it again. So I validated the at home caregivers feelings. And that is what this was about...a caregivers feelings.

If there was anything I did find personal in your post was calling an issue, with all these feelings attached and more, a peepee match. As if we are childish when we have reached rope's end. I assure you that what may appear to you as a peepee match is nothing of the sort. It's usually a last ditch effort to have one damn thing go the way it supposed to go and not completely lose ourselves in a role that no one else will take. But generally speaking it's not you I was addressing but caregivers who can't live up to the textbook of care giving. And that would be every single one of us.

But if I can't speak for us I can speak for me... I blew up many times and it was the last best alternative. 95% of the time we follow the guides ...show compassion... love to the best of our ability.... give in... and make accommodations for the sufferer. There is the other 5% where we are too stressed or there is just no available answers to help. It was something I wanted to say to and for caregivers that doesn't get said enough. There is not a solution to every problem and sometimes going toe to toe is all we have. That it is the solution... not the problem.

Eric! Thought-provoking post!

Have you personally experiences all of the listed injustices at Teresa's hand? Or was this kind of a summarization of PHD caregivers experiences that you're familiar with!

I agree totally that there are limits. There are situations where one simply MUST resort to the nursing home. Setting limitations. Explaining to the PHD, "If you ever do this, anymore, these will be the I will be forced to do such-and-such". And of course, you should be forgiven for following up on that. No one knows your situation like you do, Eric!

Or Marsha!

There have to be limits.

I'm not sure, though, that I'm clear about "going toe to toe". Getting confrontational? With the PHD? Or with others, in defense of the PHD?

As satisfying as it may be (on a temporary basis) - I simply don't see it as being useful to confront a PHD in a fit of anger. Just as it's not useful (even counter-productive) to confront a child, in such a mood.

It's quite natural to feel that way (believe me, I know!!!!!).

But go kick an inanimate object, if you must. Go take a walk. Cool off. Then confront.

You're quite right that it's totally unfair that the PHD caregiver is discouraged from expressing their natural anger and frustration, that mere 5% of the time. It's damned unfair!

But this is not about fairness, Eric! It's about effectiveness. Confronting a PHD with anger is simply not effective. Quite the contrary!

Believe me, I know!

There is no satisfaction to confront, It hurts a lot, Even if you get your way.

I'm sure this applies to the caregiver whether family or profesional

(with exception to those sick sadisic animals we see sometimes)



Edited 1 time(s). Last edit at 09/22/2007 11:47AM by JFB.

I agree with Eric. It is impossible to keep your cool 100% when you are the 24/7 caregiver & other daily life issues pile on top of caring. It is sometimes too much & we are only human. No matter how thoughtful, loving or caring we are, we are not infallible. It is not always possible to take a walk to calm down nor is it always possible to constantly put aside our own feelings & bite our tongues, especially at the end of a long exhausting day. No matter how many times I told Rik this or that will be the outcome, it made no odds whatsoever. She would still completely trash the house & attack people but putting her into a nursing home was never an option for us either.
I hate to admit that I have not been the perfect mother & caregiver all of the time, but I know I have tried my best.
When it's over & all is calm again, guilt at having failed has always been an issue, but you have to forgive your self & try harder next time.
I'd be hard pushed to believe that any full time caregiver....mother, father, huband, wife or whoever, can control them selves 365 days of the year, year in & year out, as much as we may love to be all that we know we should be. Occasionally a blow out can clear away all the pent up feelings ready to carry on & try harder to keep control for the next however many more rounds.
All I would suggest to G is learn all you can & try to understand HD behaviours. Always try to push aside your own feelings for the sake of your pHD, but if you do fail....forgive yourself.

e.

i cry reading your post, i remember, all those things and more.
you could have left and there you are still. i commend you. frustration aside, at least you can be proud of all you do.

j.
i like what you said too, hd is not a burden too hard to bear, if you are informed and love someone very much. it is a journey, you choose to take with another human being. and maybe even are grateful to be the one to share it. good and bad.




Edited 3 time(s). Last edit at 09/22/2007 08:46PM by skmf.

No, I tried to be a parent, a worker, and a caregiver all at the same time. It was fine as long as everybody cooperated. That didn't last long.

As my son got older, the overwhelming attention I gave his mother shorted him. I couldn't get him to ball games, he certainly couldn't have people over, and he felt threatend.

At work, I was expected to be on nearly 24/7 call, be available to go for a week or more at a time away from home, and look professional at least some of the time.

My wife expected me to be home all the time and take care of her. She became increasingly paranoid and delusional. I needed to bathe her and dress her, feed her, and talk to her.

All the stress about killed me. I had some thoughts that scare me to this day. The situation about robbed me of my health, my family, and my livelyhood.

There were also liablity issues people don't consider. The public at large cannnot and will NEVER understand this disease. They have no frame of reference. So when a loved one dies at home, or even worse, if they trip and fall, the public wants to find fault.

I found that out when my wife tried to commit suicide. The Police asked numerous questions. A nurse at the hospial looked me up and down and said "I don't think this woman is capable of doing this" and reported me to Adult protective services.

If she had injured herself after questions like that are raised, how much do you have to spend to get yourself out of hot water?

One time she nearly spilled hot grease on our son. What would have happend to him, and me, if he had been injured?

She became violent at times and threw things. What if our son got in the way?

Who would protect me and how much would it cost and what would be the outcome if something had happend in such a situation that takes a novel to explain?

I'm not sure about "wanting" to find fault, Fred. Obviously, they look at spouses and close family members.

Don't you think that makes sense?

... deleted, this portion left because it made sense.

I spoke to a wise woman who had this perspective: even without any help from HD, we would probably have never seen eye to eye.
We've had very different lives, and it's fairly obvious for whatever reason that I have always been very difficult for him to understand.
I am sure that he has no idea what his daughter sees in me, and he clearly does not respect me or what I do. Fair enough, his loss.

I have nothing but respect for those of you who cannot pull back from this as I am doing, or who are much braver than I and continue to confront this disease by choice. I hope that you each get what you need all the time, and what you want every now and again...
G



Edited 1 time(s). Last edit at 02/10/2008 07:55PM by G.