There most likely already is a thread on this, but beacuse i am so worried about placing Dh too soon, please post how bad and how far Alz was when spouse was placed. i know it's been said "when the carer has had enough...i really have had enough, but sometimes i think i would be doing him an enormous injustice to place him too soon. Do i wait till he no longer knows me, that would make it so much easier...or if he can no longer feed, toilet or dress himself, Would appreciate your thoughts on this...
Julia that is the most difficult question you can ask. I never had to make that decision. My husband's actions made placement necessary for the safety of him, my community and myself. Door alarms and such would not have been the way to go. He was fairly young, healthy, exit seeking and smart. He escaped repeatedly from secure facilities. For you- when you can no longer maintain your equilibrium. Of course the cost of placement is a huge factor. I watched the new patients as they were admitted. Some were very angry, some confused and others didn't seem to even notice.Eventually they all settled in. Unfortunately sometime drugs were needed,very high dose for my husband. Keep asking questions and we will be here for and with you.
Julia, I placed my husband this morning. It wasn't what I wanted but I just couldn't take any more. The last few weeks I thought I would really lose my mind. Every time we went to see his neuro he would tell me I need to place him and our associate Pastor would tell me I should place him. Maybe they saw more than I did. I think the worst part is thinking "it isn't so bad" and then the next day the bottom falls out. My DH is probably at stage 6 maybe even 7 even though he could still take care of his ADL's. His hallucinations and paraoia were getting worse each day and there was no way to distract him for more than a few minutes. I think you need to give serious thought to what you want to do NOW and LATER. If you want to get on with your life then perhaps the time is NOW. Good luck and God bless.
The biggest thing that led to my decision was a major change in his cognitive status. He shifted, rapidly, from being cognitively slow but placid and cooperative, to delusional and confused to a point where he often didn't know who I was, nor did he seem to be relating to our house of 25 years in any recognizable way. He had begun to live in a world that existed in his head and on which his actual surroundings had little bearing.
However...this could change! Because the change in his cognition snowballed into difficult aggressive/paranoid behavior, he's now in a weeks-long hospital stay for med adjustment. I don't know if he will come out in a condition which can be managed by the ALF where I had moved him. So, home--with serious meds (for now) and in-home help might end up being one of the options. Or a different kind of care site. I don't know yet.
I know what you mean though Julia. I'm still not in any way sure about what I [should have/might have/could have] done. But, at any rate, the precipitating factor was a profound shift in his level of awareness and behavior.
This is so hard...my biggest fear is that he was "placed" in an insitution, his mother sent him here half way across the world as a young 12 year old boy, he was abused, never saw his father whom he adored again...to this day at 73 this week, he has never forgiven her ...my fear is that he will see me in the same light. Today he is good...so far.
Bluedaze..my patience is very low...resentment is setting in..as much as I love him, i don't like him, this person that I'm living with now..
Like you Jean21...today "isn't so bad"...His hallucinations and paraonia are getting worse each day and it's hard to distract him for more than a few minutes. As soon as my back is turned he's into the drawers, hiding stuff, then blames our son for stealing. Last Sunday was so bad, he even prayed the lord to take him, he said he'd had enough..so angry, punched the walls, now has sore knuckles When he can't do something or thinks someone has stolen his stuff, he'll throw whatever is in his hands...So far he has smashed 4 electric shavers in anger. he can still take care of his ADL's with a bit of help to remind him to shower...etc..
Emily...the big question will always be "should we do it now, later, when is a good time"
Julia...is your dh on any meds that might control his anger and paranoia? I can't address the placement issue because I haven't had to face that decision, but it won't be too much longer and I will have to be in yours shoes. I do know what you mean when you say you can't handle it. Two weeks ago when my dh went off the deep end I knew then I couldn't handle that kind of behavior for very long. The neuo changed his meds after I had to take him to the ER and he is a different person this week, that is why I was wondering if he is on any meds that will get him under control. We are all here for you.
Emily, I have often thought about you during these last weeks. I wish you the best...Maybe I missed how you legally placed Jeff? In any case, I know this has been a tough road- to say the least- and I respect and admire your strength.
Julia,
If H would agree to placement I doubt I would have any guilt. General N, medical evaluator and neuropsychologist all say he should be placed. However, he refuses and the state says- okay- none of the above opinions matter- the person with severe cerebral atrophy is the one who has the power to decide.
I think that is crazy.
Julia-
I did not mean to sound harsh. My own frustrations coming out.
I don't want to send N to some snakepit (but a place nicer than here)!
JudithKB...no Dh is not on any meds for anger..Respirdal made him worse, and Seroquel just knocks him out like a zombie...i may have to see his geriatrian again and see what else she can give him, I can't take him to ER here as they would just send us away as it's not a life threatning situation.
Abby...after this afternoon. my guilt is way down.... It's his birthday this week, tomorrow is a public holiday, so family are coming for a birthday lunch, his favourite niece is flying in to surprise him. I'm trying to do some cooking and he's in the bedroom hiding stuff and going through drawers...argh!! Of course a Nh has to be a better place for him than here right now. We are lucky to have some nice ones nearby...it's just waiting for a bed could take months yet. Here, some places it's a matter of need and urgency rather than being on the list...so with luck they might see that i'm not coping and at the end of my tether. he and i would be safer if he was in placement.
Abby-- I don't know what state you're in, or whether different rules apply. The legality of it has never come up as an issue. I realize that there are cases where court-ordered custodianship is required, but I don't know what the demarcation line is.
I don't have any court-decreed authority, but I do have the legal document, a DPOA, which was signed when he was competent. A copy of that always accompanies us to whichever institution (the ALF, right now the hospital) we're dealing with.
Maybe the problem comes into play in cases where a patient is able to clearly state that he knows who he is, where he lives, knows that this is a care facility, and he chooses to decline treatment? Obviously just saying something along the lines of "no...get me out of here!" isn't going to cut it, or they'd have to release the entire population of the Johns Hopkins geriatric-psych wing onto the streets of East Baltimore.
As for placement, what would a person have to be like in order for the administration of a secured dementia facility to say "no, we cannot keep him here against his will."?
There must be a generalized understanding, when a person is clearly dysfunctional, has limited awareness, and is confused, that it is allowable for a family to place him. My DPOA grants me medical decision power. (the wording is something like this: He retains the right to make his own health care decisions UNTIL a medical professional has ascertained that he is not competent to do so. I suppose it has always been obvious to the medical professionals involved that he is not competent.) Maybe if I didn't have that, a court order would be required?
In Florida we have the Baker Act. With proper documentation a person may be held against their will for 3 days. At that time they are declared imcompetant and I was granted guardianship. At the end of three days a court hearing was held to extend the psych stay. I actually had to go to a class to learn what my duties as guardian would be-ha. On discharge the guardianship was rescinded.
I think the decision depends on individual caregivers and their level of tolerance and the demented person and his/her level of competence, agitation, anger, adapting to new environment, etc. A care center should have activities going on that engage a person (if he wants to be--mine didn't much except to watch not do). The big thing for me was there were more people to care for him, walk the nights with him. Two people took him to the bathroom, shower, etc. I was having trouble doing it myself. He wandered around the house most of the night. Sleep? What's that. Stove knobs had to be removed, pantry and fridge locked, etc., etc. Oh, yes, hiding things, too. After placement, I was rested and could visit and not feel angry and stressed. He, fortunately, was content there in "a nice big house."
I know in Calif. they told me when I called P. Medics to go to the ER that if he refused they couldn't take him.
Maybe for your own mental health the zombie state for him with the meds. might help on a temporary basis. If that was my only choice to get control of the situation I think I would have to go that route, because if I became ill what would happen to his care? We often are thinking about our spouses so much we forget that our well-being and health is very important too.
JudithKB...that may have to be the case, Daughter said the same thing, as hard as it is to see him see him like that.
Zippy*...one place we went through had no activities, the 10 dear old ladies there were just sitting around doing nothing, I really could not place him in a place like that, He needs to see some activities to join in, he's really good with other people, likes to joke and talk....here he doesn't know what to do with himself, i can't keep him amused all day,
Sad to have no activities. One of the activities many of the residents in my hb's unit seemed to enjoy was "Trivia." The trivia might be to complete a saying as "Don't cry over spilt......". Surprising that many know answers from long ago sayings, songs, etc., and even those in wheel chairs could participate. They played kickball, too, with everyone sitting down. Sometimes they sat around a table and rolled a ball to each other. I wouldn't be able to place anyone where there were no activities or attention given except for necessary stuff. My hb would participate some at the care center, but if I tried such things as illustrated or painting, he wouldn't cooperate. A couple guys in our support group did some very nice pieces--mostly abstract, but colors and motion were done well. Support group made cards (blank inside) and sold them to raise $ for their groups' activities. Oops! off topic.