A few months ago, after being caregiver for 4 1/2 yrs, I placed my husband in an facility. He was there just a week when they sent him out to the psych unit at the hospital, saying he was violent and suicidal. Since that week he is totally incontinent, though he was not before, and most of the time seems way over medicated. The medications are breaking us and it's disturbing to visit him and find him listless, sometimes almost incoherent and in general unresponsive. I have tried and tried to discuss the meds with them, with little result until just a day or so ago. Today they called me to take him to the Er because he fell last night and had a bump on his head. He said his head didn't hurt, he was cheerful (actually whistling a little) and after a 3 plus hour wait at the Er, I just left and took him back. He obviously didn't need to be put through all the tests, scans, etc. I placed him because financially, it's necessary for me to work. I also work for relief, but after today I am really struggling with making a decision to quit work, bring him home and live out our days. We have been married over 54 years. I am healthy and able to work, but don't know how long I could take the stress of being housebound with his constant care. Any suggestions?
You placed him "because financially it's necessary for you to work." You don't know "how long you could take the stress of being housebound with his constant care." To me, it sounds like you have answered your own question. I wondered if your husband is on Medicaid, and why the medications are breaking you. It does sound like he was being over medicated, but you seem to say that has stopped. I don't think you would have placed him had it not been necessary. Is this the time to second guess yourself? I don't think you would be "living out your days...." I think it would be so much more difficult than working out your days. Much more stress, and how much stress can you reasonably afford at your age? Sure others will have a different opinion.
Many pharmaceutical companies will give you a big break on medications if you join some sort of program. I would contact the AD Association to see if they know.
I also don't understand why the facility asked you to tke him to the ER. Wouldn't that normally be their responsibility & then contact you to meet him there? (If available) Seems to me that if he fell, they would have called emergency services & then contacted you.
So sorry about your choices, and I think I would be looking into a different facility, if possible.
I don't know much about facilities but I do have friends who have had their DO's in NH, etc. I hear all kinds of horror stories and how they had to have their LO moved to anotier facility because they weren't getting the proper care. I'm so sorry you are having to make these choices. But I do agree with Kitty that you look into another care center. My prayers are with you.
Thanks for the comments..it's good to have other input. I am, in fact, investigating other facilities. They would have transported him to the ER and then called me, but they called me first and I am glad because if they had transported him, there would have been a $15 per hour charge..not covered by Medicare or my long term care insurance. This would have been on top of the $3.75 per 15 minute charge for the attendant to be with him at the hospital. As you can do the math and figure out...that would have been a sizeable charge. I'm glad they called me first..and also thankful it was my day off, so I could do it. I am almost constantly second guessing myself, as just when I think we have things worked out for the best, something else goes wrong...and I am beginning to doubt my own decisions. My kids are all very supportive, so it's just my own doubts I have to work out. Funny Mawzy that you should mention some of the horror stories...when my husband first became a resident at this facility (2 or 3 days there) they called me at 3:00 A.M. to inform me that he was out in the courtyard dismantling the fence..trying to get out. They made such a big deal out of his destroying the fence, that it prompted me to ask what he was doing outside, unattended, at 3:00 A.M. To be perfectly truthful, they have been a little cool to me since then, and just a few days later, they sent my husband to the psych unit for the one week stay, which as I said before, seems to be the start of the incontinence and total fog he seems to be in now. I have checked into assistance for the meds, but as we do have some very small IRA's (which I am tapping into monthly), we don't qualify for aid....yet. At the rate the expenses are going, it won't be long. On this site, I read about so many new medications or supplements and have discussed all this with his Dr., but he and the nurse practicioner who visits the facility weekly, just kind of pooh,pooh all of these. Strange when there seem to be so many favorable reports circulating about them. Again, thanks for the response. I will pray for you as well.
Regarding the "over medication", this has to have been ordered by a doctor. You should discuss this with the doctor and find out why he/she felt the medication was necessary. If you don't get a satisfactory answer, you should consider getting another doctor. This may involve finding another care facility, but you need to find a doctor you can work with.
Of course I have "discussed" the overmedication at great length over the past few weeks, and that is why, just a couple of days ago, they started weaning him off some of them. that's what I meant when I mentioned in my earlier post that I had had no response until just a couple of days ago. I would be so thankful to find a Dr. I can work with and who will show more than just a flitting interest in my husband. As I said, I am investigating other facilities and there may be a light at the end of this tunnel in March. At that time, if things work out, I will also try to find a different physician and have made some inquiries in the area here. Thanks
Yes, but wait a minute, Dewdrop! How old is he? Aren't you qualified for Medicare? for Medicare Part D?? And please, go to an elderlaw lawyer. In most states, your IRA is YOUR IRA not his, and should not be counted toward his expenses if he were on medicaid. I agree with the others to find another placement but do explore other options - what would happened if you stopped working?
Dewdrop-our LO's must have been in the same facility. They also complained about my husband destroying their fence. Unconcerned that he had gotten out and was hitch hikng to who knows where. From there he went to a psych facility and then to a different facility.
I just went through months of the same horrible things you are going through now. There is light at the end of the tunnel and it sounds like you are doing all the right things by looking for another facility and getting recs for a new doctor. That is exactly what I did and even though it was a process and did not happen overnight - it did happen. I found out quite alot of info by just checking out other places in person for possible placement and chatting with them about visiting doctors. I found a wonderful psychiatrist as well as a general practitioner. I also was able to move him into another facility. For us, it was a rec. by his psychiatrist. It was such a stressful time and 2 visits to the psych unit while at the other facility and I thought there would be no end to it all. He is much better off, his meds are managed and he is cared for and safe. No place is perfect, but I feel comfortable and not stressed out. At the other place, I wondered what I was paying them for as they called me all the time because they could not handle him. He is a pacer, but the doctor and staff loved him to be overmedicated. Praise God that we are out of there. So keep looking and checking. The Alzheimer Association helped me also locate the facility he is in now (a residential facility I had originally passed up because it was not pretty enough) I can not stress how much more important the care is than the beautiful looks of a place. I pray you will get all your concerns answered soon.
Alice, I recently watched The Savages, in which the daughter of an AZ man is all hung up on how beautiful the grounds are in a particular assisted living place, what a nice reception room there is. Her brother hits her with a splash of reality: you're looking for what appeals to YOU, not to him, he's happy where he is, has people he likes, nurses kind to him, allows a cat, etc.
There is a BIG difference between an asisted living facility and a unit specifically staffed for the care of dementia patients. My husband's unit is locked at all times. There is an interior courtyard for the use of patients and family. The staff is trained in the care of dementia patients which is a lot more involved than just seeing that someone takes their meds and helping to make sure they eat. The activities are geared with them in mind as is the physical unit itself. I suggest you look for a NH or wing in a NH that is only for dementia patients. It may take some time to find a good fit. Maybe a few weeks of respite care before you commit. Granted, the "prettiness" of the place is not most important, but if it just doesn't appeal to you, you may never be satisfied with it. Good luck to you.
Thanks all for the interest and suggestions. Believe me, I know there is more than outward appearance to be considered. Alice..that is exactly what happens here too...they call me over every little thing, but when I visited last week, most other residents, along with 3 staff members, were sitting in the all purpose room watching a movie. I found my husband out in the screened patio, in his short pj's, no shoes, on a 50 degree night..all by himself, moving furniture around. Exactly what am I paying for? The facility is a whole wing devoted to dementia, but they don't seem dedicated to really caring for these poor folks. I will try to contact the Alzheimer's association...again...to see if there is any help out there in finding a good, reliable and affordable facility. We are on medicare and on part D, but I have been in the donut hole for over three months..that will change now that we are in the new year. I honestly do appreciate all of your comments and interest.