I need advice from those of you who have experienced this situation: My husband is becoming increasingly difficult regarding personal care--especially bathing, but also taking medications, and grooming, changing clothing, etc. He absolutely won't cooperate with our home health aides and even gives me a hard time. He is already on 200 mg/day of Seroquel and his doctor doesn't want to increase it. I have found a facility that I think may work for a week's respite stay, but I am concerned that he will become even more uncooperative in strange surroundings without me. I am thinking about asking his neuro if the Seroquel can be increased temporarily to mellow him out, at least during the time he is at the facility. Suggestions?
How he will react at the respite facility is an interesting question. It could go either way. He could resent it and be irascabile or he could behave like my cat when she goes to the vet..behave just fine for them and give me trouble at home. Perhaps you could ask the personnel at the facility what the experience there has been for other patients who behave as your spouse does at home and what the average reactions are there at the facility. If they tell you they can be a problem ask how they manage this. The only other solution would be to have someone come stay with your DH for a few days while you go off for a few days.
I agree it could go either way. One of the problems at respite will be the staff, how they handle him with regard to care will make all the difference. One person can make or break it and you will not know until you try. Respite can go just fine one trip and the very next time be horrible. Just depends on the aids.
Marilyn!!! The professionals at the Respite care facility should and would call your doctor if there would be a problem in your absence. Step back...take a deep breath and do what we all had to do at one time or the other and that is recognize that this disease will continue to progress and get worse and worse. Some of us lucked out and were able to keep our LO's home, others aren't so lucky. You are wondering if an entire staff at work would be less able to get him to change his clothes or take a bath than you are??? If you find a place you know is good, based on references and standards of operation, you will have to learn to just let it go..that's what respite is all about. If you keep running back and forth, worrying and fretting, you will not get the recuperative rest you so desperately need.
I'd feel much safer with him in a facility with a full staff than at home with only one person if I was away. Especially with his anger issues. My DH didn't have anger issues and his only weapon was his angry words. I am sure that Steve will not be the onlly patient they have that have adjustment issues. Just as Mimi said, after the initial tantrum, he may find himself comfortable and will do fine. You'll never know. I think EOAD patients are more inclined to have these tempermental issues. He is sick, he needs care. I didn't believe it but it is true, they have no concept of time. One day or five days..all seem the same. I was shocked when I finally realized this with my DH.
When I placed my husband for respite he became very anxious, his blood pressure got alarmingly high, he became aggressive and as a result was put on lots of meds, which then turned him into a zombie. So, perhaps getting all the meds ready so staff has something to calm him down in the beginning might help. Since he already doesn't cooperate at home, it will be probably the same in the ALF. I think the main concern these facilities have is the safety of the other residents. There are other meds that might help if Seroquel doesn't. Sometimes these meds can cause some of the behaviors. Perhaps meeting with a geriatric psychiatrist might be helpful to get a second opinion; anything to get him started with some meds that calm him down before he gets to the home, and then perhaps increase the meds a bit for that week.
I know that my husband won't let anyone help him at home with changing clothes, showering, etc. Leaving you DH with one person while you are gone might work if he likes that person and that person has had success helping him; otherwise, a home might be better; more people to help and able to deal with all sorts of behaviors.
I placed my hb in a dementia specific facility for a week in December. He was happy there and did okay; however, he did have a couple behaviors he hadn't had before: peed in waste basket in his bathroom at least once and once put his clothes in the toilet. When I picked him up, I found another man's sweater in his room and hb was wearing someone else's shoes. I think they were short of staff. After coming home, he used the bathtub as a urinal once. Now rooms are locked except the ones I want him to use. If I wanted respite again (and I will), I'd take him to this facility.
if it were me, i would put him in for a nite and see how he does before a longer term stay. would also get his meds ironed out prior to a respite stay. and that would mean something more drastic for calming him downif needed and know upfront how it will affect him. if the only problem is a bath they may be able to just let him go for a few days if you bring him in bathed the first day. just change as 'necessary'. i would want to know how he behaved at least for a nite prior to leaving him longer just to be sure. and i would definately speak to whoever administerss medications or the dr in charge to see how they would manage behavioural issues and ask what meds they use. divvi
This facility has a 3-day minimum respite stay, but I would prefer to do at least 5 days, since there is a lot of paperwork involved and a chest X-ray that must be done within 30 days of the stay. (The other places I checked had one, two and three week minimums!) Nancy, I agree 100 percent that I would feel more confident with him in a facility than at home with one person--there is no way I would chance that. It isn't that I think the staff couldn't do what I do--but rather, what his reaction will be. He has hit people before when he has been upset and I recognize that there is the potential for him to become combative if he's not handled properly. And as I've probably mentioned before, people are afraid of him when he gets worked up--I have seen it. I plan to stay in town and be available to pick him up if they can't handle him (it is better than him being sent to a psych ward), but if all goes well, I don't plan on going there until it's time to pick him up. I know that they would call his doctor if there are problems, I just want to do everything I can in advance to make it run as smoothly as possible, for both our sakes. Divvi--since the bathing is the biggest problem, I agree that it would be ok to skip bathing until I pick him up--not ideal--but possible.
I already have plans with one friend to do something fun and another to go out to lunch and movies. I have several doctors appointments to catch up with and need to have some work done in the house that DH could not tolerate. Five days are filling up fast.
Interesting that all these places that offer respite care insist on complete payment in advance. I'm sure that if problems occur, there are no refunds!
I also didn't mention--this is a locked dementia ward of a nursing home (not ALF), so there is a higher staffing level and a nurse on duty 24 hrs/day. He would have a private room--very large, he could actually pace in there, or he could walk the halls. The rest of the residents I saw were little old ladies in wheelchairs; one of the reasons I liked it was because it was quiet and that would be good for him. The other dementia ward in this NH has much more activity and I think that would be upsetting to him. It is part of a larger campus which contains the best adult day program of the 3 he attended and the hospice where his Mom passed away.
Marilyn, you have definitely done your homework and I cannot help but believe this WILL work. I also believe that it's good it will be for longer than one day,.... because it will take him (and the staff) that long to get organized and on the right track. I hope I'm not wrong. I just believe it is going to work for both of you. If anyone deserves some respite, it's YOU! Remind me (and everyone else) how long it has been. Seems like over five year...or has it been longer?
It has been 6 yrs since dx, we have been apart 5 nights during that whole time. Yes, I am ready! He is going to give the staff a workout, but I am trying to be optimistic.
Marilyn, I am writing from my phone as I am on the road driving back from VA. I see you plan to combine respite with chores. I am in the final days of my first respite with DH's part time caregiver living in. I lookedforward to this forever but made the mistake of combining a trip in which I had tasks to perform regarding our rental property in Richmond......long story........but the result was the respite from hell. I am more exhausted and confused now than at the beginning. More later to explain but wanted to encourage all "if you are counting on real respite make sure you get away, go on a cruise, get out of cell reach, etc".
Nancy I could so have used you to say TERRY!!!! to me over these past days as I can see I let a lot of things happen to me. Next time I will fiercely protect my time and No Sharing.
OK, Terry...I'll watch for you in the future. II'm here for you....
Pfranque is used to me saying FRANK!!!!!!!!!!!!!!!! .. and he will attest to the fact I do it frequently. I hope he knows it's because I love him and care for his own well being.
We're a band of sisters and brothers..and we have to watch out for one another.
Terry--you gave good advice and I will remember it. This first respite stay is a trial balloon--I am conservative--so I'm not leaving town. If it goes well, next time I will!