Just wondering if any of you have gone through the situation of planning a date months in advance for transitioning LO into care facility? I have read so many posts where transition has been a result of an incident or situation that arose which prompted a more sudden or reactionary move to an alternate setting. My wife, though just 55, has been battling EOAD for about 8 years now. Vision is greatly impaired, needs assistance with most daily functional routines, detests the fact that we have companion care giving set up in the home. She grieves her loss of independence and the fact that someone has to “take care” of her. We intentionally moved over 2 years ago to get closer to her family for the additional support and that has started to run its course. They all have lives, families, etc. I still am working full time and intend to do so for some time. I admire and deeply respect those of you who have taken early retirement, or quit your jobs in order to be the sole care taker for your LO. I am not able to do that at this time. Selfish on my part, perhaps, but I also know that I have to remain healthy (in every sense of the word) to be the best father, husband. . .I can be. Our only son is off to grad/medical school in fall. He has lived with us this past summer and I know his relationship with his mom continues to evolve and change. I have consulted with our attorney and feel I have most things in order. I have visited close to a dozen residential memory care facilities and have narrowed it down to maybe 2. My wife would qualify in many places for CADI or some other assistance or waiver. The place that I am most interested in requires 2 years of private pay before assistance would kick in. I think we will be able to manage that. I am thinking that November may be a good month and have shared that with family who are very supportive of this. Nothing sacred or magical about that date or month. . it just seems like a good time. She is impacted by loss of daylight and I know the days are shorter. Our next visit with our neurologist will be in October and I will probably make final determination then. I did discuss this with our neurologist at last visit in June and she was very supportive. My wife becomes lucid at times enough to know what is happening to her. I would never say that she is incapicated, but does need assistance with so much of her daily routines. Almost would be easier if she were not so aware of what is and has been happening over the course of the years. We still enjoy short walks, some events, restaurants, etc. I do think in time we would realize the positive aspects of being where there is continuous care. Obviously, I am dealing with guilt pangs and questioning if this is the right thing to do. Wondering how many more of you are dealing with this presently; anticipating a transition date in the near future? Sorry this was so long. . thanks for any feedback.
A lonely Friday night at the start of another lonely weekend, and I am here reading some of the posts ... I am so touched by the things people write here.
I am sorry I can't help you with this one ... DH is still at home, and I work full-time as you do - for so many reasons. We are not at the point where he needs a nursing home, but last year I was contemplating it, more for the physical (he has MS) reasons than the mental ones. By some miracle - lots of prayer - he regained his limited mobility and was no longer bedridden (after a month in bed at home, and almost a month before that in hospital/rehab). So I stopped thinking along those lines, and he has been home and enjoying life as much as he can.
I just wanted you to know someone was reading your post and feeling your sadness. There are so many good people here who will have good advice and share experiences.
I see that you have been a member for a year, which means if you have been reading my blogs, you know my motto - "Sooner rather than later". I absolutely agree with what you are doing. With AD, things can change in a second, and if you don't have all your ducks in a row, so to speak, you can be scrambling around like crazy trying to get your spouse into a facility in an emergency situation.
It is best to get on wait lists of all of the facilities that you are comfortable with because it could take a year or more for a space to become available. Or not, but it's best to be prepared.
Sid's name came up for Day Care after about 6 months, and I was sure he wasn't ready for it, but I sent him because I did not want to lose his spot, and it turned out he was absolutely ready for it and loves it.
Sundown: If you look at the top of the page in one of the "sticky" threads there is a thread for those that have placed their spouses. I went there last weekend and read a number of posts and gained a lot of information regarding placement Sorry, can't remember the exact title of the thread...but, something like: "For spouses who have placed spouses in ALF, Nursing Homes, etc"....It is close to the top. I do believe you will get a lot of information reading through the posts.
Here is the name of the thread I just mentioned CAREGIVERS LIFE WITH SPOUSE IN RESIDENCE (ALF. NH). The threads are alot about why they placed their spouses and the feeling they had about doing it. Hope it helps you.
Thanks for the comments. Appreciate links to previous threads. .Was thinking that I was not the first to have brought this up. What I am considering is a Residential Care Facility. .Recently built with forward moving administration. They are preparing for approx. 12-18 residents. .Walking trails, massage therapy,exercise, music therapy. . Seem to have some innovative strategies for those with Alz or other dementia. .Members of my wife's family visited the place today and were very encouraged and supportive at the same time. It is so hard for everyone. .
Sundown---Hard as it was tochange my thinking and decide DH would require Placement, I did that. Followed the decision with finding what was available to meet his needs and was available. Visited and placed him on the waiting lists of 2. Requirements included: locked unit; quality care; would accept Medicaid from the start; local (I have mobility issues). We waited. Nothing happened except progression of his VaD. Last Fall, our situation, financially, made it necessary to get things moving. WE had to get out from under the mortgage--under water. I pushed; searched, really struggled to implement a plan. Found a local ALF with a locked Memory Unit, which accepts Medicaid Waiver. Also would take his Soc. Sec. and pension. For me, financiual suicide, but I set enrollment in motion. Plan was for him to go there right after the Holidays. They were becoming a no smoking facility, but DH had been through a stop smoking program before, and if in a place without availability, he'd be able to do that. Because smoking (running out of cigarettes) was a trigger for elopement, the ALF post-poned admission a month to allow me to get him started on a stop smnoking med. DH knew about our situation; knew the plan; wasn't happy about it but was cooperative.
Then, stuff happened. The Sunday before his appoinment to get the anti-smoking med, we had an altercation and I had to have the Police take him to the ER for Med evaluation/Adjustment. Over 2 weeks, while beginning med adjustments, he had breathing issues; ended up in CCU, then moved to Psych-Med Unit while the newly Dxd CHF was treated and his meds adjusted, and then the plan became-transfer to a NH. Only one that could take him and had an opening was at least an hour away. I had no choice but to agree, pending a local opening, when he could be moved closer. By God's Grace, the local NH I preferred called the morning of the move. They had an opening. He went there.
I truly believe, had the planned Placement gone through, it would have been much easier on both of us. He would have settled in, just as he did at the NH, and I would have adjusted to his placement much easier as well. We lost the peace of a planned change and that made it doubly traumatic for us both. All that happened after that proved to be the best care he could have had, given the changes in his condition.
Placement was necessary. The system too slow. I would say that as soon as a Caregiver realizes Placement is on the table--move on it. Waiting lists barely move. At least here, if you finally reach the top, you can opt to wait, allow the next one admission, and retain your place for the next---but frankly, IMHO, if you manage to reach the top of the list--take it. Placement is not a negative. You are enlisting 3 shifts of multiple caregivers to do the heavy lifting, freeing you to do a better job of oversight of your LO's care and return to some of the loving relationship that was buried under all the solo Careguiving responsibilities you'd shouldered. Placement can be a win.
I placed my husband last year, before a crisis, but I knew it was coming. I, too, work full time because I have to. My DH had sailed into Stage 7. I had him in daycare, but it just wasn't enough anymore. I was getting 3-4 hours of sleep a night. I had tried respite first at a group home, and it had gone well. The home was confident he would be a good fit. They had an opening shortly there after, so I grabbed it right away even though they were willing to hold it for a bit. I had already been told by one highly rated home in my community that they didn't want to take a male with early onset. That spurred me to action since placement was inevitable anyway.
Good luck. The facility you mentioned sounds like it is doing some of the right things. Music therapy has been good for my DH.
Sundown, I am one of those who quit work to stay home. We added on to the house and my youngest daughter moved back home to support us. Now she has high blood pressure. This is still what she wants to do. It is a personal decision how to handle what life has dealt us. You just have to do what you think is best. And I'm sure once we make our decisions we all have times when we wonder if it was the best.
Sundown I am sure it's a hard decision for you. But it does sound like you have done the legwork and it seems like a good fit for your DW. I totally get the need to have to work, I have 2 teens so I need to work to keep medical insurance and we need the income. I just don't see how it would be possible to stop working. You mentioned that you have "companion care" set up in your home, is that through an agency? I am just starting to need that for hubs and I am trying to figure out where to start. My husband is just 48 and has EOAD. And really don't feel guilty, you of all people will know when the time is right? :)
Sundown - as others said, I would put her name on the list. Plan for it. When the time comes you can always change you mind. It is not set in stone. Sounds like she may be ready for it and you too. Leading up to it, if they set up some type of 'day care' you might take her and let her get use to it.
The only other option I can see is full time care at home.
Sundown--when my husband was admitted to a geripsych unit for the second time in 2011 (voluntary admissions for medication adjustments, not the result of crises), I decided to do what you're talking about. I deliberately wanted to have time to evaluate the different facilities and choose the one I thought would suit us both best. I have to say, placement worked out better than I had ever imagined. He was less in touch, however, than the way you describe your wife; I agree that it may have made things easier to manage.
Don't forget, nothing is set in stone. If you move her in November and it's a flop, you can always bring her home or move her to another facility. But most likely, you have chosen a good place--and you may actually see her adapt very well to the new environment. I never realized how Steve may have been struggling to function in our home until I saw him navigate the ALF so easily. There's something to be said for an environment that was designed specifically for the dementia patient's limitations.
P. S. Steve also has EOAD and I was really concerned about him being the youngest in the facility. Turned out, it has made no difference as far as I can tell. I wish you well in taking this difficult step.
Sundown, I have only just placed my Dh last Monday...it was the hardest thing I've ever had to do in my life. At the moment we ( me in particular) are still trying to come to terms with it. When I'm not there the staff say he quite happy, joking and getting on with everyone. I think I'm finding harder to take than he is. What I find the hardest was having to do things behind his back...sneakly, telling fiblets, but it's the only way i can get through this transition. Guilt and sadness sweeps over me at times...i hope it gets easier with time.
I had his name down in 8 different places, and when this one came up it was like being hit by a bomb...do i take it or go to the bottom of the list again...a single room with own bathroom, so hard to get here. As we all know, sadly someone has to die to free up a room. If a nice place comes up, as others have said nothing is set in stone, you can take her back home or move her to another place.
Sandy, hard to imagine going through this, let alone with 2 teens. .Our son will turn 23 this fall, but has been dealing with this in one way or another since he was in middle school. .mom getting lost coming to baseball and soccer game, forgetting school conferences. .I know he developed coping strategies as well almost in ways to protect her. .Respond to my email address if you want info on companion care. .I think every state is a bit different. .My heart goes out to you, Julia. .I appreciate the honesty of sharing emotions. I have pictured what this day may be like for quite some time and it is so difficult to imagine. .MarilyninMD and everyone else, your input is valued and greatly appreciated. This site is so important for us to exchange ideas and share the pain. .