This post is for anyone who has or is struggling with the placement dilemma.
After having a phone conversation yesterday with another member here, I decided that I should share this with everyone. Based on what I had heard/read about dementia facilities, plus a horrible experience DH's father had years ago, my goal was to keep my husband home for the duration. However, because he was a more challenging patient than average and required two geripsych unit stays in 2011, last summer I took the big leap and moved him into a dementia ALF.
The results have been better than I even dreamed. First, from my perspective: the staff is hard working and well trained. They are cheerful and morale seems to be great. They treat each resident as a VIP, which my husband really responds to. He is happy and cooperative, quite a contrast to the way he was at home or in the geripsych unit. (He had a major med adjustment before entering the ALF, but the neuro who sees him there was able to successfully lower some of the dosages and he remained stable.)
I have asked myself, would the same results have happened if I had brought him home from the geripsych unit instead of placing him? I think the answer has to be no. The results are too striking--I don't think meds alone could have produced this change. It must be that the environment is better for him than I could ever have created at home. He has lots of room to pace--the layout is specifically designed for it. He has other residents and staff available for interaction at all times; and activities tailored for dementia patients if he chooses to attend.
Having read the book "Dancing With Rose", I expected the staff to be overworked and frazzled. Since last August, I've been there most days and have never seen evidence of this. Perhaps the lousy economy has made people happier to be employed????
The only downside (besides the hideous cost) is that he has fallen about 6 times, but beyond scrapes and bruising, hasn't been injured. Generally, no one has seen him fall. At home, he was more closely monitored and didn't fall; however, he was wearing his glasses at home, which he can't tolerate anymore. Between agnosia and terrible vision, falls do occur.
My advice--if you're negative about placement, try some respite stays to stick your toe in the water. You may be pleasantly surprised.
I have also been very pleased w/the outcome of placing my DW in the Villa just over a year ago. Be advised, it takes a lot of work to make all the preparations that will be necessary for the placement to be successful. My DW is being cared for better than I ever could...but nothing can prepare one for the lonliness that follows.
marilyn i just posted on another thread how well you have done with steve and you with regards to his placement. who would have known he would have adjusted so wonderfully after all he *you) have been thru. excellent news!
Marilyn, your experience with placing Steve in a dementia ALF has caused me to look hard at my decision to keep DH home and to now consider placement with an open heart and mind. Rich also has challenging behaviors and we've had good success with meds until the last few months. I am coming to the conslusion if I can find the right facility and setting for him I think he will be better off. He will have more stimulation than I can provide each day and he will be with staff who are trained to handle his "up all night" activity. Thank you for your encouraging report on Steve's adjustment, it helps give me the courage to seriously rethink my plan.
Marilyn, I was so happy to hear you have both adjusted so well. Fantastic news! I do believe you are right, I think the enviroment is better for some of our loved ones. The stimulation alone can do wonders. Again, so happy it worked out so wonderful for you ♥
I am also happy with the placement of my husband. He is in a private Alzheimer's facility with 5 levels of care. There are 3 shifts of staff and nurses so he gets the 24x7 care he needs. The staff is very caring and there isn't a big turnover. The staff is refreshed and seem to have the patience of angels. They get regular training and are working with the local university for studies, with the permission of the families. I have also done better. Although it has taken me just over 2 years, I'm no longer exhausted and stressed.
I too am happy with my decision to place Don. He is very content. I am relieved that he is safe. I see him every day. I started with a respite period. He did well. I visited every facility in our town. I think I picked the best one for him.
I'm glad to see there are others who are happy with the outcome of placement. It is such a hot button, emotional issue and I think we all tend to dwell on the negative stories we hear.
One thing I didn't mention is that I'm glad I picked a place close to my home (I had considered another that was farther). An unexpected issue came up--Steve has periodontal issues now and needs better oral hygiene care than the level provided in facilities. At this point he is basically just chomping down on the toothbrush and the aides can't get much done. I had a dentist visit him several times and he did a deep cleaning (with my help). Now I am visiting daily and using the small brushpicks to clean by the gum line; hopefully, this and dental visits every 4 mos. will prevent eventual tooth loss (teeth are in fine shape). If the ALF was farther away, going every day would be difficult to manage. I guess you never can predict what issues may surface that will require daily visits.
Marilyn, I think how our loved ones transition directly effects how we as spouses manage the placement emotionally. Lynn's placement was the thing nightmares are made of. However he did transition well after the first few months. I often wonder if he had been in the hospital prior to placement if it would have been easier for us both.
I of course still want him home with me. But that is my selfish wish. I know he is happy there and getting a level of care I just could not provide alone. In short, I love him enough to want what is best for him...not me.
I too still go in daily. It's been three years, it is my "new normal"
I am glad your husband is close, it makes the daily visits easier to manage. Again, delighted to hear how smooth the transition was for both of you. Such a blessing <3
I'm also very happy w/my hb's placement for same reasons: close so I can visit every day, can take him to dental, optometry, podiatry appointments. Help w/meals. He has much more activity than at home. He's a wanderer so spends much time walking the halls. Staff is wonderful. Monday his bp fell and he was nonresponsive; so taken to hospital across the street. Wonder of wonders, he's now where he was before the incident. Two aides came over to visit him and the mother of another works on hb's floor and she visits him. Small town friendliness. Back to care center's memory wing tomorrow, probably. Care center has a "butterfly" program which is similar to hospice tho' not so intense as I understand it, but extra attention for whatever needs is provided if one wishes to sign up for it. No extra cost. Patients stay at care center and whatever staff or extra meds are needed is available. Thinking I'll sign up for it because I expect there will be a "next time" incident.
Thanks to you all for helping me through these difficult decisions. The fact making my decision harder is that the best memory care unit I have found is 45 mins one-way from our home which would mean a major investment in travel time/gas if I were to visit every day. There just isn't anything closer. Ideally I would like to visit every day to make sure he is well cared for and receiving appropriate care. just one more challenge.
LFL I also had a long drive to the next city. I visited as often as I could-but never on a schedule. I wanted to see what the staff was doing at different times. It made no difference to my husband as he had no idea who I was or when I came.
bluedaze*... I go at different times too on occasion. Mine is only 3 miles away, which makes it easy to drop in anytime. And you're right, he has no idea about the time.
Nikki, you are absolutely right about a smooth transition for the LO making acceptance for the spouse easier. Yesterday, a friend who works in the nursing home industry came with me when I visited Steve. She commented "You're lucky he's so happy." That's true of now, but she wasn't there to observe the early years of anger, elopement/dismissal from daycare, last year's agitation that resulted in 2 geripsych stays. My mental state has mirrored his, all along.
"My mental state has mirrored his, all along" Marilyn, that is a wonderful expression. Sums it up beautifully! I have noticed people treat me differently this past year, they are more open, people I haven't seen in years will actually ask me about how Lynn is doing! I have had several people ask me out on dates *gasp* People just seem more willing to engage in conversation with me again.
I asked my sister, why do you think all of a sudden people are showing compassion when for years they avoided me like the plague. As only a sister can, she was brutally honest, in a tactful way. The gist of what she said was... that for years and years I had the look of "the living dead", that my sorrow was etched clearly on my face, and my whole body language screamed, stay the hell away from me!!!! She said now I smile all the time, and that it was me who had changed, not the people around me. Well, I'll be damned! Perhaps there is some truth in that. We do mirror our loved ones don’t we. I have always said, if Lynn is ok, then I am ok. When he was tormented, I was too. So much for thinking I was kidding the world and hiding my true feelings!
Lynn is so content now, so happy and peaceful!! Like your Steve, no one who sees Lynn now can begin to fathom the hatred and anger that use to possess them. Maybe this is our reward for living through that hell?? Bless you heart, you deserve some happiness and peace! ♥
Abby, please read my post to you under the "There Should Be a Concrete Way of Evaluating the Need for Placement" thread. ((hugs))
Visited the one that's closest to me by a longshot today. It's a Sunrise. Daughter Becca and I really liked it, and saw this as a potentially very good choice for Jeff. Man these things are killer pricey. Now I'm in the...can I justify this kind of expense? when? what am I doing am I crazy? phase.
Sigh. I don't know. Things are so slippery-slopy around here I'm inclined to at least get on the waiting list. Maybe, in that interim, I'll either a) think of an alternative, b) recognize the obvious financial solution that I'd somehow overlooked, or c) hit an emergency situation and be glad I've previewed.
em-once I made up my mind and got off of square one I felt so much better. Once things start speeding up it seems they are one step ahead of your plans in terms of need or decline.
emily--Not to throw in a monkeywrench and I may be wrong, but I think I heard a few yrs ago that the corp that owns Sunrise was headed for bankruptcy. If true, I would think that could lead to cutbacks and might impact the facilities bigtime. Perhaps it's all resolved by now, wanted you to know.
A little searching reveals that they did skate close to bankruptcy in '09, but SEEM (according to the various analyses investment gurus subject such things to) to be on fairly firm ground nowadays.
Of more immediate concern, in doing such web searches you end up digging up all sorts of cautionary tales about how sometimes ALFs decide they can't meet your LO's increasing needs, or how staffing is sometimes inadequate after hours, or...aak...etc, etc.
I don't know...I still wish Uncle Charley could move in.
Personally, I think it very wise to at least investigate and get on the waiting list. If something comes up, you can always decline. It was hard, but I was glad I did. I knew which places I wouldn't even consider, and I had a favorite. I was able to hang on until our favorite one had an opening. The whole thing just sucks!!
And Marilyn... hell no!! Anyone who knows me at all knows that isn't even a possibility. Hence why I was so shocked these people even asked! pfffft
Not even a possibility? What if the 2 years runs out and George Clooney is on the lookout for a new squeeze? (His pattern is supposed to be a new lady every 2 yrs).
Nora, that just made me laugh right out loud!!! Duly noted, hands of Clooney!! Lol. I think it is wonderful for those who are able to find new love while still fighting the battle. Kudos to them!! But no, my heart still belongs to Lynn. ♥
There is a thread somewhere here about this I am sure.. just can't seem to find it. I am not so naive that I don't know that people do find love and marry again. I know my Gram's said her second husband was the love of her life. So I know it happens. But I just don't see how. How can I ever love someone like I love Lynn? It just doesn't seem even remotely possible!!
Nikki--I agree that when your husband has been the love of your life (as mine has too), it is unlikely that you'll find another relationship that can get anywhere near that standard. However, I don't think that rules out having another special person in one's life at some point.
If I can speak from the male side of this question, just briefly. I believe life's for sharing...and sharing w/someone that you and they both think about first thing in the morning and last thing at night. Our LO are irreplaceable and the memories will remain forever. But a life alone, be it after they have passed or after they have left us in mind and spirit, I believe is a life missing what we all can regain..a renewed spirit..renewed health...life is not perfect...but I believe in can be filled with some perfect moments...some new memories.
tom, your words really expresses the way I feel. Life is fleeting and nobody knows that better than those of us on this forum. We will never forget the spouse who was in our life for most of our life and we will never forget the good memories - and also the bad. Everything is not good. Some couples have had numerous difficulties during their marriages and really, all of us have had our share of disappointments and failures in life. We are only human. I think, personally, Many of us tend to put our loved one "on a pedestal" after they are gone. Perhaps because of guilt feelings or perhaps it has been ingrained in us for years. However, I think it is important to keep things in perspective. I have been fortunate to have understanding children who also share my values. They do not put their late father on a pedestal. Almost daily we smile and laugh over shared memories of good times as well as the bad. He had his faults, as we all do.
In my opinion it is a shame to "live in the past". We have the rest of our life to live and to waste it is such a shame. I am sure most of you know someone who hangs on to their past life with a deceased spouse. History has proven we can love again - if we want to. But, in order to love again - we have to accept the past - good and bad - and realize a new love will be different from the old love.
Keep your options open and look forward to some day caring for someone else again. If you still have your spouse with you - love them, touch them and care for them. They will be gone - too soon - and you will be alone..
Lois, that is very inspiring and so true, and we should all take a moment to reflect on your post. sometimes the guilt of living gets the best of us regardless. the 'pedestal theory' may come from seeing them robbed of their lives and the need to address the shortened years they were here on Earth -a mental mausoleum of sorts. those walls we try to build to protect ourselves along the journey sometimes do a very good job keeping us in as well. divvi
Lois, I have always been impressed with the way you handled your DH's death. We only have two options...Live in the past or step out into the future and start a new beginning. At 84 I am determined not to live in the past. I miss him a lot but if I could wave my magic wand I would not want him to still be here in the shape he was in. I have no interest in sharing my life with another man but the younger ones here on Joans should remember that the heart is big enough to love more than one person.
Yep, but I sure get where Nikki is coming from. A few years ago I could, speculatively, imagine a future with another person. The closer that potential future gets, the more unrealistic it seems to me that I could encounter that person whom I could trust as much as I have Jeff.
Well, I'm not the say-never type, but I look to the future with the belief that it's better to be alone than to be with a wrong choice.
I am going to ramble a bit, so asking for forgiveness right off the bat lol.
Lois and Tom, I do understand what you are saying, and your points are valid. I do however have to wonder why everyone seems to be hung up about people reliving their past. I personally don’t see what is wrong with that. If you had a fantastic life together, what is wrong in basking in those memories?
My Mom was never widowed, but divorced. She dated several men and one she almost married. After that relationship ended, she said she was going to live her life for her, not a man. That was over 20 years ago!! She would certainly take offence if someone told her she had wasted her life just because she didn’t share it with it man. She has a full, wonderful life, surrounded by her family and the people she loves. She does what she wants, when she wants. She is happier than she has ever been. (her words)
My Gram on the other hand was old school and believed she needed a man to make her happy. Her first husband died when I was two. I don’t remember him at all. But, I know I wouldn’t have liked him. He was a “cheating scoundrel” yet, my Grams loved him. She met and married the man I always knew as Grandpa when I was 6, in 1973. He was the love of her life. He died a horrific death from cancer in 1979. They had 6 wonderful years together.
She dated some in the 80’s, it was so hard for me to see her cry when it didn’t work out. Finally in 85 she took a live-in housekeeping job for a guy, and they developed a relationship. Though they did care for each other, it was not the love fantasies are made of. Until her dying breath she told us how Grandpa was the love of her life. I often wondered why she stayed with this guy if the love didn’t compare, if you aren’t head over heels, why settle? With age come wisdom. She had settled, because to her it was better than being alone. I often wonder if she missed out on true love by staying with him the last 22 years of her life. How tragic that thought is.
So my point I guess is, she DID find some sort of love again, she did continue on with her life with a man, yet she still deeply treasured the love of her second husband, the love of her life. Those 6 years with the right man, were far more happier than the 22 years with the wrong man.
It gives me pause, and it makes me think.
Though some may put their loved ones on a pedestal after AD, Lynn’s spot was firmly reserved before diagnoses!! Was he perfect in the eyes of the world, of course not. But, he was in mine. And he still is. I don’t feel I should have to downplay that now. And I see nothing wrong with holding that love closely.
Emily, I feel the same as you…I already know there is no way I could feel the depth of love and trust with someone else. I don’t see how it can even be possible. We fell in love when I was 18. I admired and respected him as much as I loved him. That love only grew stronger as we shared our lives together. I am no longer a child of 18, but a woman of 44, and though I am a romantic at heart, I see no ‘other love’ in my life. I know I have already experienced the love of my life.
I can never experience those same feelings with someone else. Just as I can never be 18 again. It is just a fact. Though I will conceded that there could ‘possibly’ be someone I care about in the far off distant future…. I wonder how fair it would be to them, or me, to try to recapture the impossible.
I don’t know… I AM trying to have an open mind, I truly am. But I can’t help but wonder if you HAVE had the love of your life, well, what else is there? What can possibly top that!!
Nikki--I'm not looking to top it--nothing could. But the sad fact is, our society is made up of couples. Now I realize I'm conventional, but I believe many of us are. For example, there are many places in the world I would like to travel--sure, I could go with a women's tour group or a girlfriend, but it's not the same. I miss going out to a nice downtown restaurant on a Saturday night, just the two of us or with other couples. I could go on and on--and you are almost 20 years younger than I--I don't want to live out the rest of my life without doing those things with a partner. Will he be what Steve was and is to me--of course not--that couldn't happen again. And it doesn't have to--a new relationship could be just that--different in some ways. It doesn't have to be a marriage; I never want to be a dementia caregiver again! I don't think it's an all-or-nothing thing--so I'm going with the mindset that there could be someone out there I'd have feelings for, and could build a new kind of life with, different from the one we had.
Logically I agree with everything Marilyn, Lois and Tom have said as well. My heart is just extremely stubborn.
I think you hit the nail on the head for me Marilyn. I AM thinking all or nothing. That is a personality flaw of mine. I am that way about many aspects in my life.
I can now finally look back on our life together and recall the memories with great pleasure. This is huge for me, as before I couldn't even let myself think about our life before Alzheimer's. But now, those memories bring me comfort. But.. I am still at the point where I can't seem to think about what we are now missing, and have been missing for years, without nearly falling apart.
Just reading about going out to dinner, having conversation, my mental block started going up, because I could just bawl from all that is lost.. all that I desperately miss.
But then I can't help but think, would any man fill that void? I tend to think it is those moments with Lynn that I am missing.
It's a long journey, and we change with each new passage. I wont say never, but I still highly doubt it.
I have however given it a good deal of thought. Mainly because I have been asked out several time recently, and also because well, one can’t help but think of these things while on this lonely journey.
The only plausible solution I have found worth consideration is to have a friend who also has lost a spouse to Alzheimer’s. We could be a couple comfortable with the knowledge that we are actually a foursome. If I could meet someone man enough to not be threatened by the love I would always feel for Lynn…. It might work. Possibly. As Marilyn said, not the love Lynn and I shared, but different.
It seems that we all have our own feelings on what we want when our LO’s are gone. I for one do not want to get into another relationship. I have never been on my own & I want some ME time. I like what Nikki said about her mother, “She would certainly take offence if someone told her she had wasted her life just because she didn’t share it with it man.” I think a lot of single people would feel the same way. I have a cousin who has been divorced for over 20 years & she tells me that she is happy with her life. Does she get lonely? Of course. Married people also get lonely. Marilyn, you said that you don't want to live out the rest of your life without doing things with a partner. I can understand that, but believe it or not it won’t bother me. I am by no means a hermit, but I can be by myself. I have a bucket list of things that I want to do so I will definitely keep busy. Will I get lonely? Of course. But like I said, people with partners also get lonely. Just sayin'!
Nothing wrong with knowing what you want, is great in fact.
I liked what you wrote about married people also being lonely. Though that wasn't our case, at least not before Alzheimer's. My sister told me she was never as lonely as she was when she was married. WOW!! I just can't imagine......
Just as each of our LO are different, it would make sense that we too would each travel this journey with a different future in mind. For me, it is the hope to have a mature relationship in the future that
helps make the sun come up every day, helps deal w/a love lost to a terrible disease and get past the lonliness I face each day...another meal alone in front of the TV...and the urge for a pity party. It seems
more and more people understand our journey and are accepting of us having both a relationship with our LO and with another...knowing such relationships with another can take different forms and have
different depths...but...and this, for me, is significant, one needs to be vulnerable of heart and soul to again. To me, this step, being vulnerable, is worth the emotional risk it carries because the reward of
sharing life, should I be fortunate enough to meet someone someday, will be so worth it.
I have the perfect solution.. when we build “our community“, where we can all live together and help one another.... we can also go out on dates and enjoy each other’s company. There are less men than women, so of course we have to share. And you men should probably consider working out so you can keep up with all of us. *grin*