We "lent" Jeff to my brother-in-law this afternoon, then daughter Becca and I visited a very nice residential care facility for people with AD and related dementias.
It is small, well staffed, clean, comfortable, and houses 20 residents. Although the cost is high, there is much to recommend the place, including the presence of two resident cats, Fred and Ginger. The woman with whom we met is the owner/founder, who began the enterprise to address her dissatisfaction with the available possibilities when she needed to place her husband (now deceased.)
The visit was useful for me. It clarified a couple of things. It is not time for Jeff to be in a place where most of the residents are quite elderly and dozy. Although Jeff's ramblings may be a bit random, he needs some more awake people to interact with.
But here was my biggest problem: At this particular home, although family "involvement" is "encouraged" (quotes intended,) they really don't want you to hang around. Visit, yes. Between 10 and 5 (or a little later during evening daylight seasons,) but your visit should be "quality time," and not more than an hour.
I understood the basic argument, that their consistent routines are important in the residents' care and whatnot. And I really did come away with a sense that the quality of care is excellent there.
But I cannot imagine, at this time, turning Jeff over to someone else and essentially bowing out. I was imagining being able to spend a decent amount of time with him, wherever he lives, to retain the continuity of my presence in his life. Both Becca and I came away with the same impression--that's not right. At least not for us, right now.
It could possibly be a reasonable choice for someone who had no family to remain active in his life. Or for a person who no longer knew who everyone was. But we're not there and may never be there.
Have others experienced this preference on the part of the facility, that you restrict your presence?
I can only speak for myself, but I would definitely stay away from someplace that discouraged family involvement and limited visits, regardless of their reasons.
Family members and I are welcome anytime and for as long as we want at my wife's facility. We are also invited to stay for the group meals. They have a cell phone that we can call and they will bring it to my wife so we can call when we can't visit. I would suggest you look to other options.
you should be able to visit within reason at any time in my own opinion. i would not consider a place that poses restrictions to visitations with my own husband. while yes consistency is a factor so is being able to check up on them at any given moment.
Yes, it bothers me a lot. I was thinking that staying for meals (even if I brought my own,) and spending more time there while I work on my computer or something...just to be present...would be important to both of us. This, however, is not what they want at the place I visited.
emily--here's my experience since August: Steve's facility doesn't restrict the time or length of visits. However, I doubt that I'd want to spend much more than an hour at a time there. Our routine is: I locate him when I come in (sometimes the staff helps if he's not readily visible); take him into his room and toilet him (that way I get to examine all of the body); check out the supplies/his clothes closet and drawers; trim nails, touch up his shave, whatever needs doing. Then we take a walk and I get him cookies and lemonade from the reception area, we sit in an alcove with a radio and listen to music. Sometimes I bring in a CD player with CD's I know will appeal to him. He cannot hold a real conversation and has no sense of time, so really an hour is good for all that. The only time it varies is if he's in an activity when I get there; in that case, I go in and sit next to him. He knows me every time I go, hugs and kisses me, and it doesn't seem to matter to him how long I stay. He is truly "in the moment". I don't go every day, perhaps 3 to 4 days a week, and my brother goes another day. I have also gone for meals and helped him eat, but frankly, I don't have much of an appetite to eat there. Several times a year they seem to have big parties when families are invited to attend. I am completely satisfied with the care so far, but I am vigilant to consistently keep checking everything.
Yes, that makes sense. When/if Jeff is less aware, it may be a choice I make. I think it will be important to me, though, NOT to have a sense that my interventions and presence would be discouraged in any way.
I wouldn't be interested in placing my hb anyplace I couldn't go as often as I want or to stay as long as I want. Or, to take him out for a ride or an ice cream cone in the summer. I visit every day at different times and stay for varying lengths of time. Before winter arrived, I took him for rides. Will be taking him to our dentist for a checkup next week. (Hope there's no snow.)
My experience touring has been limited to three at this time. Each one did not prohibit, but seemed to discourage visiting at meal service. Due to his FTD, H is always hungry and I have no doubt that he would respond to service at whatever time; in addition there snacks are available 24/7.
As explained to me, they view meal time as a chance to observe not only the eating capabilities of a resident, but their interactions.
If they would prefer for me not to be there at those times it is okay with me. The unlocked facilities I saw seemed to be more relaxed about this. The locked facility, and I do not think H is ready for that at this time, really focused on routine, such as specific places to sit for service, and I do not think there were menu choices.
Since Zibby mentioned it, the facilities provide (in the price) service to and from doc and rehab services and it would be up to me whether or not to meet H there.
At this time I am so focused on whether or not I will ever get him to accept an ALF I can't imagine taking him out on my own, but that's another story!
My DH's home has no limit on visits nor any restrictions as to when during the day or night those visits happen. That being said, it is a small facility, perhaps 12 at most and there is not sufficient room for everybody's family to spend a lot of time there. Personally I never visit before 10 because I know staff is busy getting everyone up, showered, dressed, breakfast, etc. Evenings after 7 or so are the same, busy getting everybody ready for bed. So the time restrictions the visited facility recommended make sense to me. My DH knows exactly who I am and is always happy to see me, saying things like "there's my wife!" when I walk into the room. But with his lack of a sense of time, spending hours there just to be present would not be of any benefit to him and would be difficult for me. I also notice that the visit frequency or lack thereof make no difference to him.
emily, I would be concerned about a facility that wanted to limit my visits too. I am sure there are valid reasons the ALF has for their limitations, however, the family should always be allowed to visit whenever and for as long as they chose as long as it does not disrupt other residents. When DH was in an ALF on a trial basis, I could visit anytime and as long as I wanted. He was in the memory care locked unit for sleeping (the residents in the locked unit were much farther along in the progression of their illness-dozing, in diapers, very out of it) but was allowed to socialize in the regular area of the ALF with an aide present or with me supervising him, participate in the alf events and ate with the other residents (not memory unit folks). I found it very enlightening to eat a meal or 2 with him-I learned how well (or not) the residents were supervised during meal time.
I understood the philosophy, and a lot of it was what Weejun cites--that they are very busy before 10, getting people dressed, cleaned up, breakfasted, etc, and that they're trying to keep everyone to a routine. It's just that I cannot see, in my case, that I'm willing to let go enough to have set restrictions.
Agree, Emily. While I may not choose to visit at 7:30 in the morning, for example, at least I know I CAN. For a lot of reasons that you have posted lately, I don't think you are ready to emotionally let go enough to place your DH yet. For me at least, besides my personal medical issues prompting placement, I was emotionally ready for that step.
Emily, I agree with Weejun. If you're like me, you will have an "aha moment" when it is clear that placement makes the most sense. You don't seem to be there yet (and may never be)...you posted before that we think alike--I too like to play around with all possibilities in my head way before a situation arises. Gives me a comfort level that I'll be prepared when/if I'm faced with a tough decision.
Emily, if you want to be with him that often, you may be better served hiring an in-home agency to take care of him in your home rather than placing him. In most cases it is less costly, and you would have complete control. You have approval of the caregiver, so if you don't like the person they first send out, you can get another; and continue until you get one you are both happy with. You would have control of his schedule, what he ate, his meds, etc.
In-home agencies aren't for everyone, because you have to lock up your papers, valuables, etc. for safety reasons (I had everything in one bedroom and locked the door and I had the key). My husband received excellent care at home. I turned the dining room into his room once he was hospital bedbound because it was right beside the den and he could see me. I chose in-home care because I could spend more time with him and it fit my pocketbook better as well.
Marilyn--thanks. What you are saying makes complete sense to me. I'm not there, just exploring.
Mary--yes, that may end up happening. Jeff isn't anywhere near bedbound or needing "nursing" care yet. If I have an immediate problem, it's just the one we all know--how to not have to take him with me everywhere I go.
I volunteered with an entertainment group that did shows at many care facilities. It was an eye opener in terms of realizing there are different philosophies and approaches to care from facility to facility. Lots of very good ones but some I would not want to move anyone into. Your checking facilities now is an excellent idea. Far better to discover what's available when you have the time and there's no pressure for someone to be placed now (or yesterday).
I was very glad to at least have some knowledge of many facilities when my parents' health needs required assisted living care. I still had to make appointments to see places / meet managers etc but I knew which facilities to not even bother with. But then one of my parents ended up in hospital and required residential care. I then had to check out places with actual openings. Again, having visited some of them previously, I knew which ones to avoid.
The residential care place I chose is good-----responsive and caring staff and welcomed family visits anytime and for any length of time. Recently however they've asked visitors not to come at mealtimes as some of the residents were being distracted by visitors (rather than focusing on eating) and others have developed swallowing / choking concerns (and eat with less risk when not engaged in any conversations). My relative falls in the latter category. I, however, like to keep an eye on food / menu items, so I often stay until mealtime and take my parent to dining area so I can check that food being served is good etc (it is). I also check in with staff who let me know if there's any concerns or changes with eating patterns.
My husband is in a Alzheimer's ALF. I can visit any time I want, night or day. I would wonder what is behind that guideline - is it her experience?
I too was worried about all the older folks at the ALF. He was 65 when I placed him and everyone seemed to be in their 70's and 80's or older. He was in stage 6/7 when placed and it wasn't an issue.
The woman who runs/founded the ALF I visited began it when her own husband needed placing. She was dissatisfied with what was available and decided to start her own place, initially with only five residents. They later expanded in a new location and can have 20. Her husband has since passed, and she continues to manage the home. It is VERY pristine, pleasant, colorful, and I was convinced that the care was excellent.
Although I didn't ask this question specifically, based on our conversation I would say that her rationale for the restrictions on family presence have to do with a particular philosophy about what is best for the residents. Everything is managed there...for example, a dentist comes to make rounds, they manage all pharmaceuticals there rather than the patients' families needing to renew and refill Rx's. Stuff like that. There is an area where you could hold a family gathering or party, which is enough away from where the other residents are that they wouldn't be disturbed. I don't know if that would be disturbing, but I guess it would for some people.
I think it could be great for someone who really NEEDED to turn over the care of someone...for example, a place for an AD relative who has no local caregivers, or maybe the local family members all work and CAN'T be that present. In cases like this, you would feel good about the care there. That's just not where I am. I need to remain very involved, so that's going to have to be an important criteria if it comes to placement.
Emily: The facility my DW is in is almost identical to the one MarilyninMD described above. When we first placed her, I had lunch with her 4 times per week and also visited almost every evening. However, I only eat lunch with her on Sunday now and visit 2 or 3 evenings per week and I don't stay more than an hour each time. Oftentimes, now it is less because time doesn't mean anything to her and we can converse with each other about anything. She doesn't know what she did today or when I was there last. However, she still knows me and is always thrilled when I arrive. That is good.
As most of you know already, the decision to place her was taken out of my hands and ,now, I am glad it was. I didn't know how bad she was and that I was not capable of taking care of her any longer. That doesn't mean it wasn't tough. Just that it was right.
Emily--the ALF does allow me to supply personal care items, pullups, wipes and his meds. It's more work, but a big monetary savings, especially on the pullups. They do a markup on everything, and the absorbency of the pullups they supply is about half of what I buy at Walmart at twice the price!