For several months, I have been looking at a place to put my husband for a short respite stay. Since he is in Stage 6 of AD with no physical limitations or other health concerns, my first thought was a dementia-specific, secure, ALF. I visited several over the last few months and never felt confident that these places could handle his behaviors due to his physical strength and unwillingness to cooperate at times (even though he is on 200 mg Seroquel/day). I guess because of his age--66--and his general good health, I hadn't considered a dementia unit of a nursing home.
Yesterday, my brother and I visited a large nursing home complex we were considering for my Dad. While we were there, I talked about respite for my DH and we also looked at their two dementia units--one with more activity going on and the other, more quiet. I realized that the quiet unit (where he could have a private room) would probably be the best solution for a respite stay that I've seen.
So my point is--I think I'm finally thinking outside the box here. My husband is in great physical condition, "young" at 66, but because of his level of brain impairment/challenging behaviors, I do think he's nursing home material. Has anyone experiened this kind of dilemma? I know that you can pay a geriatric care manager to do an evaluation of the patient and recommend facilities, I just never thought it was necessary to go that far. My experience has been that the ALF's will pretty much tell you they can handle almost any patient because they want the income. However, once the person is there and problems start, they either demand the family hire a private aide or they send the patient out to an ER or psych unit. I'm trying to avoid both.
You are correct about ALF's telling you anything you want to hear to get your money. In the experience of everyone in my support group, it seems that "word of mouth" is the best way to go. If possible, you need to speak to caregivers who have placed their LO's in the facility you are considering. At least 3 caregivers and/or therapists who work with clients in that facility. Except for placing them and finding out it wasn't the right "fit", I don't know of any other way to get the real picture than "word of mouth".
I am in the same place. DH-age 61-is late stage 6. Totally incontinent, lots pf pacing,etc. So far one assisted living place I like said they would take him, but I worry they would call in a couple months and say they are really not set up for him. I was going to get on a list for one nursing home with a good record, but they were actually reluctant to take on someone younger that paces. I am sure if he was in a wheelchair, it would have been different.I too am looking to get respite for a few days this spring and more than likely eventual placement this year. I wish this wasn't so hard!
Joan--Unfortunately, in this area the facilites seem to have little experience with patients like my husband. At one ALF I visited, I asked for family members' contact info. to get the references you suggested. The marketing person said fine, and then never called me back nor responded to my phone calls and emails. I then called the executive director of the same facility, she told me she had a conference call and would get back to me right afterward. That was about a month ago, I still haven't heard from her! No one in my support group has a spouse with behaviors similar to my husband, so I can't use their experience with respite facilities as a guide. I plan to arrange a respite stay at the nursing home I visited yesterday, and just stay in town in case I get a phone call.
I agree with Joan. Before placing my husband, I asked many times if they would be able to handle his behavior problems...he was 59 years old & very strong... I did not sugar coat anything. I was told yes that would be no problem. Well, there was, every time there was an incident, I was notified that he may need to go to the hospital for behavior adjustments. Which he did for 3 weeks last year. Believe me it is very stressful to receive a phone call that you have about 15 minutes to decide your choice of behavior units or home. What bothered me was that since I visited every day, I saw other residents acting out, but, they never leave for behavior's. Even though these residents are 20-30 years older & women than my husband, they are sometimes like hell cats. I just remember a year ago, I was at my wits end. The Nursing Homes I visited had most of the dementia residents drugged & in wheelchairs. I just bring myself to place him there. He had gone to the ALF for Daycare, BUT, I soon found out that what takes place on 2nd shift is different from 1st.
Marilyn, our situation is similar to yours. DH now entering stage 6, young (61), healthy and physically strong. In 2008 I placed him in an ALF when he was in mid-late stage 5 for respite. I asked repeatedly if the workers were trained in handling someone of his age and abilities (most of the residents were much older and further along in the disease). I was constantly reassured they could easily handle him. Well, they called me on the 3rd night he was there because they couldn't get him to take his meds. That continued whenever they felt they couldn't handle him. I went everyday to be with him and noticed the staff was afraid of him. Finally he escaped and they wouldn't take him back and had him admitted to the psych ER. I think you're probably better of with the nursing home.
Yes, LFL, it is stories like yours that make me agree with your last statement. It took me a while to mentally accept a 66 year-old physically fit and strong man needing NH care, but I'm afraid that is the reality.
marilyn, its always best to err on the side of precaution. the what -ifs that can happen while you are trying to have respite always will outweigh the beautiful activity lined centers that look appealing but are not set up to give the attention and one one care that a skilled locked down unit will be able to do. if i used a respite center it would be geared to keeping them safe and quiet and not rock the boat. his routines are whats necessary not what they think he should be doing. good luck finding the right fit. divvi
marilyn, I did hire a geriatric care manager who recommended Arden Courts. They specialize in dementia care. She had a previous client who was 59 and very healthy who lived at an Arden Courts facility and advised they handled him well. I looked at the Arden Court closest to me and found that they were better able to handle younger patients. The mix in the one I looked at had a higher ratio of men (in their 60's-70) and the residents were probably in late stage 5 to late stage 6. You might want to check them out. I found one in Silver Spring, Towson and Kensington when I googled them. Fortunately I was able to have DH at home after they released him from the psych facility the other ALZ facility sent him to, but I would consider Arden Courts again if I needed to. They are private pay and will not take medicaid. They also release the client to a NH when he/she is no longer ambulatory.
LFL--Arden Courts was one of the facilities I looked at. Unfortunately, the environment reminded me of the adult day program where my husband got overstimulated (too noisy). Also, a friend's husband, who was late 60's with AD and did constant pacing (like my hb) could not be handled by their staff. They let him go outside and pace in the garden area, where he fell and had to be hospitalized. I do know that one of the two Arden Courts in my area has handled younger patients well when they had dementias other than AD (LBD, for example) but that meant that they weren't as mobile or physically strong. I just don't feel confident that they can deal with my hb's behaviors and his strength, plus the noise level may push him over the edge. I wish Arden Courts could work, it is significantly cheaper than the NH ($200/day vs $300/day), but think the NH I found will be better for him.
It is odd that no one has even suggest ASF for my husband...Age 63, stage 6, but in good general health. That being said, I still can't find a nursing home either.
Ann--why can't you find a NH? The reason I started this thread is that unfortunately for those of us with younger spouses, I think we may have more success skipping over the ALF route and going directly to the NH-level care. Based on Kadee's and LFL's experiences, it sounds like ALFs can have a much lower tolerance level for problem behaviors and when the patient is younger and stronger, it exacerbates the situation. If anyone has experience to the contrary, I'd sure like to hear it!
I am dismayed to hear that ASLs are miseading us about having patients leave due to behavior problems. I have visited 7 - 10 places in a couple states and asked each "under whatcircumstances would a patient beforced to leave." Some said never would they just call the caregiver to come get them without trying all avenues (doctors, staff, meds, etc). Some seemed shocked to hear this is commonly encountered. I believed them. Am I being naive?
Terry--Sadly, in a word, I think the answer to your question is "YES". Think about it, if a dementia patient is seriously acting out and the staff can't calm them, there is nothing (other than a shot that will knock them out, which an ALF can't administer) that they can do that will diffuse the situation but call the caregiver or call 911. We all know that doctors aren't on call 24/7, and even if the doc is reachable, giving additional or new medication doesn't take effect immediately. My husband had problems at two daycare centers and the staff called me and I immediately went over and picked him up. Otherwise, I know they would have called 911 (they did it with at least one other client that I know of). I think ALF marketing people will try to make everything positive and upbeat when you initially speak with them--why wouldn't they? It is a profit making business, and like any other, they want to secure as much business as they can.
I am trying now to force myself out of this quiet peaceful room inHoliday Inn so I can make 3 daydrive back to Ark. So hard to drive towards home when I don't want to go home.
In our situation, many of the ALF dementia units would NOT take him precisely because they knew they couldn't handle him and the other clients were very far along in their dementia. I also fully disclosed to the ALF that did accept him about his behaviors, but I think they saw dollar signs in accepting such a young patient who could be there for many years. And they did call me first (at midnight) when they found DH mising, but also called the police. When the police brought him back to the ALF they refused to take him back. Terry, after our experience I would say yes, they are selling you a bill of goods. Trying to find a place for DH became problematic because he was deemed a "danger" to the other residents after the ALF incident (he didn't hurt anyone but that's what they labeled him).
There is another factor here--I don't think ALF's are regulated the same way NH's are by the state governments. Consequently, they can get away with a lot more and don't have anyone to answer to when something happens like the "lockout" LFL referred to above. I believe a NH can be fined or even shut down temporarily by the state if they don't comply to regulations, but things with ALF's are a lot more loosey-goosey.
For my husband, it all comes down to who will pay.... For our state, he needs to be bed-bound. He isn't...yet. If we could pay out of pocket, finding a NH wouldn't be a problem. It almost seems as if he went from working to needing a nursing home overnight. Of course, it has been 4 years now, but it sure took a long time for a dx!
My DH is also age 65, probably late stage 6 and has episodes of aggression and/or agitation. The ALFs that I have looked at have "dementia care" wings that serve many patients, but upon further questioning and research, all of the above options have been mentioned---call caregiver to come pick up, call 911 and transport to ER, or hire an aide to assist him in the ALF/DC unit. We were never able to get him to adult day care and part-time, and full-time home aides (agency and non-agency) has been very difficult to maintain.One problem after the other wears me out as much as caring for him by myself. I'll be looking into nursing homes and live-in care next. I'm just so disappointed with these agencies and ALFs that "specialize" in Alzheimer's care, yet show the door when our loved ones exhibit dementia behaviors! What was the name of the place in Illinois (I think) that "gets it" when caring for resident/patients with Alzheimer's or other types of demntia?
My DH is also age 65, probably late stage 6 and has episodes of aggression and/or agitation. The ALFs that I have looked at have "dementia care" wings that serve many patients, but upon further questioning and research, all of the above options have been mentioned---call caregiver to come pick up, call 911 and transport to ER, or hire an aide to assist him in the ALF/DC unit. We were never able to get him to adult day care and part-time, and full-time home aides (agency and non-agency) has been very difficult to maintain.One problem after the other wears me out as much as caring for him by myself. I'll be looking into nursing homes and live-in care next. I'm just so disappointed with these agencies and ALFs that "specialize" in Alzheimer's care, yet show the door when our loved ones exhibit dementia behaviors! What was the name of the place in Illinois (I think) that "gets it" when caring for resident/patients with Alzheimer's or other types of demntia?
I am afraid that the sad conclusion is that ALF's generally are not equipped to handle the young-onset (especially male) dementia patient. Re hiring a private aide in addition to ALF placement: How many people can actually afford that? Unless one has LTC insurance, the ALF bill alone can bankrupt most people.
My DH is not young, he's 87, and I recently placed him in a VA facility. There are many younger people there, in both the alz unit and in the other units. If your husband qualifies (mine is in a state facility where he did not have to be service connected disability (altho he is) and I couldn't be happier. I have gotten one call from them, and that involved his getting a new room (closer to the nurses station because he could turn off the bed alarm). He definitely has behavior issues, that's why he's there, but I see lots of men (and that's why I chose it.... MEN).... who are in their 60's or less.
My DH is almost 68 ina nursing home while he gets rehab for his back. They chose not to put him in the "Dementia" floor because the further along patients are there shouting bad words and alot of sreaming goes on there, they thought it might really disturb him, I am grateful that they did not put him there he is late stage 5 I think. However the other care wards are not really prepared for him either as he needs to be directed as to what to do or he roams the halls aimlessly. He is passive and is mobile even with his back issue so they are not sure what to with him. he can not get to the so called activities they have planned there, someone needs to go get him each time, I dont think the staff as that much time. Anyway I think active with alz/dementia is much harder for them to work with. They said there are people with his level on the dementia ward they are just way older and not mobile, it is frustrating.
chris r--my hb has no military service. He came of age during Vietnam but had a college deferment; I think that this will be true of many of the boomers who are aging and will need medical care. Interesting that you see many younger men in the dementia unit; I haven't seen many in any of the facilities I've visited.
marilyninMD---my DH will be 66 next month, stage 6, ambulatory, not a veteran and no LTC insurance. (I have LTC.) I am still visiting and evaluating ALFs and NHs. Arden Courts in NJ is $7000/mo. and do not accept Medicaid. I have learned that dementia care is so expensive and the current programs will not meet then needs of EOAD patients anyway. Where do I go from here? Like you, LFL, terry, AnnMW and Sherizeee, I find this so frustrating and stressful.
jerseymama, I too live in NJ and cannot find a suitable environment for my DH other than being at home with a live-in aide. Fortunately he has LTC but that won't last forever because the policy has a payout limit. Like other boomers, DH did not serve in the military. Took his chances with the lottery and wasn't called so he was no longer eligible. If you would like to connect and share experiences/info my email is in my profile.
jerseymama--have you talked to an elderlaw attorney regarding Medicaid eligibility? Here's another catch-22: since our husbands are "young" for dementia and are probably much healthier than the typical NH patient, I don't know if they would be medically certified for Medicaid (even though they probably require NH-level care due to cognitive and behavioral issues). However, that is something you could check out. I haven't had to because my hb has LTC insurance, so he would be private pay.
marilyn---It will be all private pay for us. When the money runs out, then we can apply for Medicaid. Not sure about medical certification. After bankruptcy (not an absolute, but possible), I'll go live with one of our kids.
LFL---considering a live-in too. Keeping behavior/agitation/anxiety/depression under control is always an issue. Some aides quit after an episode. I don't blame them---it is scary sometimes. Going back and forth with the medications trials is necessary to find the right one or combinations. Then when meds are working for a while, things change and it happens all over again.
Oops! Forgot to use the word "the" in the website address. www.thegreenhouseproject.org I have found one greenhouse project in NJ and will be checking it out next week. It is a ranch style home for "elders" with 10 private bedrooms w/baths. It is under construction on the site of an existing continuing care community. There will be six such cottages with patios and walking paths.