I read your blog today Joang. I know the time will come when I will probably have to place Bill somewhere. But not at this time. I am constantly being told "You have to be prepared". I'm as prepared as I ever will be. I don't think we are ever fully prepared. At this time, I feel I am strong enough and healthy enough to take care of Bill right here at home. I don't feel sleep deprived or worn out. There are times when he gets angry that I question keeping him home, but those times are gone as quick as his anger. No one knows how I feel either health wise or emotionally; they only think they know how I, or maybe how they, would feel .
If and when I am no longer physically or emotionally able to care for Him, I hope I have the insite to follow through with placement. Just don't tell me now that I have to think about it. I think about it everyday; nobody needs to remind me.
That Blog was not meant to push you in any direction, and I hope you didn't take it as singaling you out - there were others who wrote on the boards struggling with this, and I received a lot of heart wrenching e-mails from people who are also struggling. That is why I put up the blog - I was hoping it would give comfort to those who are about to make the NH decision.
As I always try to emphasize, each inidvidual knows themselves and their spouses best, and needs to make decisions based upon that.
I didn't think you were signaling me or any one person out, Joang. I was just letting off some pent up steam. I'm just hurting this morning and where else can I go but here? I actually liked the blog, Thanks.
I understand where you are coming from. Feeling the same way you did for so long, I fought the idea of placing Ralph. You will know when you can no longer care for Him. We all care and want the best for you. You have to do what you feel is right for you and Bill.
How did I know it as time? When I no longer had the patience with him (sundowning, pacing, not sleeping and not knowing who I am) and then felt quilty. When my doctor said it is time. My family saw the effect on my health and I was not getting the rest I needed.
It has been very stressful trying to find the right place for him. I looked at several places and just could not picture him at these homes. It took two months of looking. One place I could see him at, but the waiting list was long and it would be 6-8 months. My advice is to start looking because chances are the good places will have waiting list. I should have started sooner, but felt I could take care of him and was not ready for that step. As it has turned out the place I will place him, felt right. I could see him there. It is small with only 5 people and two other men not much older then Ralph. He is only 65. After checking references, I knew this was what I needed to do for his sake and mine. I will be able to care for him in a different situation without the stress. I am not deserting him, it is another level of care for him. Yes, I feel quilty that I could no long take care of him, but it goes with the territory. The next two weeks will be difficult, but this whole journey has been hard. My friends and family are supporting me and are helping me. I will place him the week before Christmas, as I will have family here. He does not do well with other people in the house and will be confused with company. Christmas means nothing to him now. My Ralph is no longer with me I keep telling myself. Not sure if I am writing this to help others or to convince myself that I am doing the right thing for Ralph.
What about Assisted Living? In our city, we have a facility that provides this for AD. I have a friend who's LO was placed last March. It is cheaper than a nursing home, but the care is different....the whole living arrngements are different. I have even heard of a "couple" going into assisted living together because they both needed assistance with living, but did not need nursing care.
Hi Joyce, I have a friend who brings up placement about every 3 months. I have told her that I don't want to talk about it. Gord is not anywhere near that time. She insists that she wouldn't be a friend if she didn't bring it up. It makes me very angry.
That is the thing that really gets to me. I have a friend that is always telling me how she is worried about me. At least she tells me that about every 3-4 months when she has time to call. I figure if she was that concerned she would be doing more than a phone call every few months. Maybe I shouldn't complain, at least she calls that's more than Bill's sibs do.
Friends of mine who haven't seen O in years keep asking me if I am getting help. It puts me off. Some also tell me of other friends who are in an excellent facility. If they were to visit us they would realize that we are still managing and that this stage could go on for years. We have a very good long term care facility near us with a brand new Alzheimer wing. Once in a while as I drive by I imagine O being there but the thought does not linger. I hope we are a long way from that day.
Our neighbor started telling me that I would have to place Jim soon, that I needed to realize that. Guess what, that was almost 8 years ago. These people are great at giving advice but are not very great at being the same friends they were before the illness began.
I want to take care of Gene as long as I can. Incase that day comes that I can't, I have started to prepare for it. I have visited many places and I have decide which one. It is one my neighbor had her husband in 4-5 years, and was very happy with. I have placed him on their waiting list. I hate the thought of him being there, but I know he may need more care than I can give at some point. My house is very small (retirement home), The bath is so small it is hard to fit two people at once. If he becomes bed ridden I am not sure I could manage. Starting this week,I have my caregiver 3 days a week for 4 hours. I am hoping this will provide me more time.
My friends have taken me on as their project. They are getting me out walking at night after I get him to sleep. It is gated community so it is safe to walk at night. They also are watching him if I need to run to the store or Dr. appointment when my caregiver is not here. So I will just keep taking it one day at a time.
Barbarakay...it sounds like you are doing all the right things. Having a back up plan is always a good idea...we just never know. I am happy you have friends who are stepping up to the plate. By the time I could have used help from friends we were already so isolated from them that they had moved forward in their lives and Butch and I were left behind. We had no future so to speak....all the friends were planning their next vacation and what they were going to do when they finally retired...well, we couldn't vacation any longer and my husband had to retire at the age of 50 because of the AD. But, I don't blame them....I am not sure I would have been comfortable being around someone who was an unpredictable and sometimes scary as my husband was at that point.
I hope that you don't have to place Gene, but if you do, it is not the end of the world and your caregiving takes on a whole other meaning. Take care of yourself.....
Good advice Sandi for all of us. At one point my friends did not know what they could do for me, but now they are a great support system for me and come to my rescue when I need help or just need to talk. I have learned how to ask for help, which was not easy.
I guess the issue I have with Nursing Homes is the fact that they are under staffed and the issue that they will answer the call button if your LO is able to do that. My DW is very unusual I am told, in that she is still in control of her bowels and pee, is able to communicate at times and know what is going on and questions what is happening to her. Yet she can not do any ADL's because she can not walk or sit up.
I think if she was in a NH they would just medicate her to keep her calm as her needs would not be met till they got to her.
moorsb--You said "I think if she was in a NH they would just medicate her to keep her calm as her needs would not be met till they got to her."
That was my assumption as well--but in our case, it wasn't true. I placed my husband in Arden Courts, an ALF, in August. They have actually lowered the dosage of psych meds and the care provided is fine. I check everything--including the quantity of meds being given (because I order them and bring them in); examine his whole body frequently; have watched an aide give him a shower; have gone at all times of day/evening, etc. I think I have high expectations in terms of care and they are being met--a pleasant surprise!
I recognize that my DH is opposite of your wife--completely ambulatory but can do no ADL's because of significant cognitive impairment, cannot communicate (with words, that is--he can communicate with behaviors). However, my point is that we can't paint all facilities with the same brush.
My dh and I have talked about his placement, but I always try to make me the one that will be placed because I might have a stroke or whatever and he then would have to go to a Assisted Living place because he couldn't live alone. He has always just said...He understood and it wouldn't be a problem. Well, what happened on Christmas Eve was very strange. We were at my daughters home and my SIL's mother is in an AL place that is very, very nice and when it came time for my SIL to go get his mother to spend the evening with all of us he asked my dh to go with him. Well this is unbelieveable. (This place has a memory wing that is very nice too).
My dh thought her place was beautiful. He couldn't quit talking about how nice it was and not like a nursing home. When we came home and again yesterday he just kept repeating how the place smelled so good and the aides were so friendly and how beautiful the place was. Well, he didn't know that I had been to that place a few weeks ago just to check out the price, etc. My dh is not ready for placement, but I wanted to be prepared. I think I have found the place I would use without much effort on my part, because thankfully my dh had a review of the place before he even needs to go. What a relief this is to me. Yesterday he even said that place is almost as nice as our home. Also, there is a nursing home facility next to this AL place if and when he might need that type of care.
For those of us wrestling with the knowledge that we will have to place our LO at some point, and knowing that we need to interview places, it would be helpful to know not only what we should look for but what questions we should ask, and is it best to just show up or is it better to make appointments or both ?This may have been discussed before but I am so far behind on things I would have missed it.
Mimi: I just walked into this place and a person was free to talk to me and give me a tour of the memory wing. I was probably there for about an hour. Of course, I knew of the place because my daughter's MIL lives there. My daughter had visited several places when she knew her mother-in-law would be moving from Az. to Ca. and would need to be in an assisted living place. She made appts. and went on her lunch hour and had lunch at the various places she visited. The lady that interviewed me kept telling me how smart I was to do this before my dh would have to be there. She said most people wait and then are in a panic situation and it is difficult under the best situation.
Since my dh seemed to really, really like this place and I liked it also, I would not hesitate to place him there if and when that time comes. Also, what I like about it is there was a nursing home on the grounds and also apts.
My daughter came through again-They'll see anyone that just shows up, but you might not get the person that can best answer your questions. So an appointment is good. Mention during the visit that you'd like to stop in again during the evening or on a weekend while you're making the decision. Respect the rights of the people living there- see what the visiting hours are.
I'm sure you can Google typical questions to ask/things to look for.
Specific to dementia care, I'd also ask:
•About programming. Just having activities isn't enough. What are they doing to meet the needs of residents with different levels of dementia? The needs of someone at a stage 3 aren't the same needs of someone at a stage 9. •What are weekend and evening programs like? •Ask to see mealtime? Are they cuing and prompting, or just feeding? Is it dignified? •How do they problem solve behaviors? Be honest, if your loved one is having specific behaviors- ask how they'd handle them. •What kind of ongoing dementia training does staff get?