Don't think I can do it
I have a move in date of Feb 1 for my DW's placement. The closer it gets the more apprehension I have about it. I feel as if I have a second wind and can care for her a while longer, maybe one more year, I'm falling into a routine cleaning her each morning because every morning is a mess but it's no longer a big deal to me really, I just do it. Many times it means me getting in the shower with her so I can clean her better, I get her dried, warm and changed and we're good.
I had a some very bad coughing spells yesterday and she was trying her best to tend to me, trying to get me up and take me to another room, in her mind that's what she thought I needed. She had so much concern for me even though the concern only lasted a few minutues until it was all forgotton but her heart was trying to help me and I saw that.
Honestly, I can't bear the thought of her first few nights without me, her being all alone, no familiar faces, calling out for me, terrified of strangers changing her, trying to shower her. . .
I wish I wasn't this way but I just have too much concern and empathy for her and how lost and afraid she will be. I had to place my mom and that was hard enough but my DW. . . it's different. . .
Would she put me in MC if the tables were turned, I'm sure she would and a lot sooner but. . .
IDK. . .
Comments
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I’m so sorry. You’ve agonized so long and hard over this decision; it’s no wonder you’re so conflicted as the time draws near. I can think of only 2 pieces of advice for now. (1): Nothing is set in stone. If you truly believe you’ve made the wrong decision, you can always change your mind and bring her home. But you will never know unless you try. You’ve come this far…… (2): Imagine February 2, 3, 4, and days to follow….a leisurely shower, for you, an opportunity to start your day in a clearheaded manner and go visit DW, enjoy her company as her DH and not her caregiver. Sit with her, hold her hand, dine with her, walk her around, ENJOY her. You will never know until you try.
At stage 8, I sometimes recall the dark days of Alzheimer’s, but more vividly, I remember all the times I just got to love and enjoy DH. It was so much easier to love and enjoy him when I no longer had to care for him 24/7. I would never have known unless I tried. Stay strong. Either way, only you can decide what’s best for both of you.
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I'm with beachfan on this. Why not give it a couple of weeks at least, as respite for you? I don't think you appreciate how worried we are all about you, your situation seems desperate and unsustainable from the outside.
I'll use myself as an example of what we can talk ourselves into: the night I almost died of pulmonary emboli back in August, before i drove myself to the hospital i thought to myself, "maybe this isn't so bad, maybe I should just wait and see how I feel in the morning."
I probably wouldn't have waked up, honestly. But to be blunt i think you're playing similar mind games with yourself here. Im sorry....But I think you should go ahead with it.
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IMO you have already served your duty above and beyond what most people would do. It’s time to do what is best for YOU. I am going to be right behind you, still making decisions about which MCF and exactly when but have them ranked and intending to make it happen in next 2-3 months.
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My heart is breaking for you. I went through the some of the same feelings with my DH's placement in AL after his last hospitalization, even though coming back to our home was an impossibility. I was projecting my strong emotions onto him and feeling a great deal of guilt and felt like a failure. It will be 8 weeks tomorrow, and I am finally able to own my conflicted emotions and allow him to feel his. I have not abandoned him. I have actually performed the most loving act that I possibly could by placing him where he gets the care that he needs. In doing this, I have also been able to begin to physically and emotionally recover from the ordeal of in-person caregiving. I am now his advocate and, most importantly, his wife.
As Beachfan and M1 have said, give placement a try. At a minimum it will be a desperately needed respite for you. And after giving it a fair chance, if it truly does not work out, you can bring her back to your home. You need to do this not only for yourself but for her, too.
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Beachfan put it so well. You have done so much you owe it to yourself to give it a go. You know live, guilt and concern is the true source of your second thoughts. Be honest with yourself about how long that second wind you described will last. Of course only you can decide.
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Ghphotog, I understand your worries but I agree with the other posters here. Give it a shot, your wife will probably be a lot happier once she settles into the routine. I was stunned at how well cared for my husband was, how happy he was with the nurses and the other people with dementia. What saddened me is that I should have done it earlier. I was like you thinking all kinds of thoughts. I asked my husband while visiting him if he would like to go home. His emphatic no was all I needed.
However, if things go wrong, you can bring her home. I honestly think you will be surprised at how well she will acclimate. You also need respite and to get yourself to a good place again. Then you can be her loving husband and visit her as often as you wish.
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Playing devil's advocate, unless you are able to commit to aging-in-place at home, placing while your DW has enough bandwidth to bond with her new caregivers and also has some semblance of who she is to allow caregivers to know and respect who she is could be a positive thing.
Because my aunt was widowed without children, she went into a MCF sooner than many spouses here would have. This allowed her to create meaningful relationships with the people who provided her care. She was a firm favorite for whom rules were bent to give her the best of what they had to offer. Even though she was admitted to secure MC, she was often included in AL outings because she enjoyed them-- early on she did AL arts and crafts and enjoyed the weekly lunch excursions where she could have the BLT or lobster roll forbidden at the CCRC with Kosher catering.
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I couldn’t bear the thought of placing my DH either. We’ve made it through to stage 6, maybe early 7. It’s not always easy he will stay here in his home.
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That is my thought my DH is touching stage 7, I hope I can keep him home with me too. Everyone has to do what is right for their LO, I hope I can do it time will tell. I feel some hope when I hear people can and do keep LO at home but it's not easy for sure.
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The user and all related content has been deleted.5
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Before my husband was placed in a home, a social worker I had been talking to said, "when he gets accepted, and he is placed, do not take him back home". At the time I had no idea what she was talking about...but then I did.
It was so difficult to leave him there! There were times in the following weeks I so desperately wanted to bring him home but the words she said repeated in my brain. I know he is safe and well cared for there. I miss him, but I am able to get things done that when he was home I couldn't...and I look at pictures of our travels and LOVE him and what we have enjoyed! When I visit we talk sometimes about when he is "better" what we will do together...of course...unless there is a miracle...we know the eventuality.
Just sharing so you know that we all go through similar heartaches.
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Thank you everyone!! I've read all your responses and have taken them all to heart. Your perspectives have helped me a great deal.
But now I have another concern and will post a new topic.
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Hi ghphotog,
Just over 4 years ago, I faced the same decision. My wife spent one week in memory care, and my heart broke.
I brought her home.
This is only my experience, and it is not meant to sway you either way.
I could simply not handle it yet. Yes, it may have been ok for her, and she would probably have acclimated. But I mattered too, and my heart was not ready yet. The heartbreaking week gave me my second wind, and that was over 4 years ago.
No one else can make this decision for you. No one knows how tired you are, or how long you would be able to go on caregiving. My health, my mental state, and my ability to continue caregiving could falter at any time. I still have the same facility on stand-by if that day comes.
Others have suggested you give it a try. You already have it scheduled. May you find peace in the fact that no matter what you decide, it does not have to be permanent. You are allowed to change your mind and your plans my friend.
Love
Bill_2001
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There is something I tell myself anytime I have a gut wrenching, life changing decision to make:
“The moment of absolute certainty will never arrive.”
When I accept this, I move forward.
I hope this might help you in some small way.
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@ghphotog The thoughts that i find unbearably painful, when thinking about placing my DH, have kept me from making the decision to this point. BUT, what’s been happening here is the spells where i think “ok, i can do this a bit longer” are blasted quickly by ever-changing more frequent declines in several aspects of his condition.
I have looked at a couple MC but never made a commitment, today i see another, and I want to not dwell in the pity of the situation but consider all sides.
While grieving the anticipated losses, fears, and pains associated with placing my DH in MC, I’m forcing myself to also answer the questions of:
Will DH receive improved, personal care in MC? Maybe even bettering his days?
My DH has significant agitation and restlessness, MC/hospice would be much better at modifying meds that help him regulate; allowing him to mentally relax into a more calm existence. Would that improve his quality of life?
What is more important right now for DH, to be in his home (that he more often doesn't recognize as his home) with me doing my best but failing in aspects every day or to be in the care of multiple people who specialize and have experience with dementia while I can love him and spend time with him frequently?
And i remind myself this isn’t the End of Us. MC would be a painful change but it could be a change that allows US to have many more good, warm, relaxed moments,,,moments that are becoming hard to have at home while I struggle to keep up with his declines. I am to the point where i just want to love him, i want to have time where I can express that. Where I’m not stressed and constantly occupied, operating in the red-zone. DH expertly senses mood and energy even though he can’t comprehend or discuss anything. A “softer” me brings US closer in whatever limited capacity that is. If financially possible, I believe MC would offer more meaningful closeness as in reality that time is slipping.
And, as others have reminded us, we can change our minds with any decision we make. Nothing is permanent. I still imagine my DH passing at home, i don’t know if that’s for him or me, i think for both of us. But if there are signs of passing coming closer and if Drs felt the drive home would be safe, I will with the help of hospice.
And Thank you, @WIGO23 , perfectly put.
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Thank you everyone for such thoughtful and compassionate responses.
The MC called me yesterday to see where I was with this and I told the Administrator that I just couldn't do it but she was very understanding and talked about trying it for 30 days and giving myself some respite. If it doesn't work for us then fine I can bring her home.
The thought that this isn't permanent really help put my mind at ease and I'm pretty sure I can do that.
I know she will be very lost, calling out to me, "Where are you!, Where are you. . . ", having strangers bathe and change her, looking for me at night. . . but the MC really helped put my mind at ease and I really need at the break. Then if it's going well and she likes it then I can leave her but thy really thought it was a good idea to a least try it, even if only temporarily.
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Sounds like a very reasonable plan, good for you. I know you worry about her being distressed, but there is mercy in the inability to remember it.
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How do you visit MCs without your LO getting upset? My DW would ask why I wanted to look at MC, since she "doesn't have a problem"? We did look at two CCRCs together awhile back, and that was tricky. I explained that I just wanted to know what these places look like, and that was good enough. But CCRCs also house unimpaired people, and MC is for people who are obviously impaired.
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Not recommend to bring LO with you when touring. You need to have a candid open discussion with staff about behaviors and needs, and be the decision maker because they are incapable of making proper choices for themselves.
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I am very new to all of this. DH diagnosed with “moderate” Alzheimer’s about 3 months ago. I see those of you here talking about numbered stages of the disease. Where do I find those? I also am so touched by your empathy. I can’t help but wonder how you afford placing your LO in MC. I don’t know how I’ll ever afford it and have any money left to live on since I’m 12 years younger than my DH. This may be the wrong group for such questions. If so, I apologize. The caring comments here are helpful to me as I think about future decisions I will face. Thank you.2
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I feel your pain. I can't help but think of the day I will be faced with the same choice. My DW is terrified about what is happening to her and I can't bear to even think of her facing it alone. I wish you and your LO the very best and hope for a situation that is good for you both.
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@17pla, as wizmo said, you tour by yourself and sadly don't discuss it with your partner. Hard to break that habit, but have to. Like others here you don't want to infantalize those with dementia, but the comparison is inevitable, it would be comparable to discussing a school choice with your toddler. You don't do it, and use your own best judgement.
@bdlk,welcome to the forum. I believe there is a group for new members that has tried to include the staging documents frequently referred to, and there are numerous posts on the caregivers forum that also include them. Regarding financing, you need to get with a certified elder law attorney as soon as possible to discuss necessary legal documents and finances (look at nelf.org). Most people have to rely on qualifying their loved one for long-term Medicaid. Memory care is ridiculously expensive. But a good attorney will know the details of qualifying which vary by state.
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I apparently didn't make my point clearly. Of course I would have to visit MCs without DW. My question was, how do I do that without upsetting DW? She always wants to know where I'm going, she doesn't really like being left alone, she would ask whether she could come with, and she would question why I would need to visit an MC since she "doesn't have a problem". Yes, I know, fiblets. That's hard for me, because I'm a lousy liar.
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Fiblets is the correct answer. You get used to it with practice. The best answer is not the truth but any answer that will bring the most comfort. That's the way to think about it. You have to realize that you stop sharing details with your spouse, and that is very, very counterintuitive, but the reason you do it is to bring comfort and not upset her. Perhpas you can still use covid as an excuse. She doesn't need to go anywhere with you that exposure can be avoided.
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I know, it’s so hard for me to lie because it goes against everything I was taught as a child. I only needed 30 minutes the other day. My DH always has to go with me, will not leave me alone at all. So when he asked if I needed something at the store ( even tho I don’t let him drive) I told him leeks and turnips. He said he wouldn’t be able to locate them, so I said ok I’ll go. Be back in 10. Maybe something she wouldn’t at all be interested in doing? I’m so sorry for your distress 💙
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Leeks and turnips...brilliant solution!
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I had to learn it is ok to be wrong and ok to tell a therapeutic fib. Is it better to be kind or better to be brutally truthful? PWD have their own truth that is better left uncorrected and there is little difference in feeding them incorrect information if it makes them feel better or avoids unnecessary upset. I used to be much more of a perfectionist and have let go of so many things in order to keep the peace.
For my MC search and for many other errands I need to do independently I have friends or family keep DW company and tell her I’m going to a dentist appointment, hardware store, or some other place she has no interest in. She won’t remember from one day to the next so I use the same fiblets repeatedly.
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Find something your partner doesn't want to do and say it's that. I always said I had to run errands.
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I doubt any of us want to put our loved ones in MC, but it will be better for both of you if you do. My wife went in, in October, and adjusted well. They can take better care of her than I can. For instance, changing her diaper was a chore for me. Now, one of them will distracter her while another one changes her. I suggest taking her with you while touring care facilities. I took my wife and I think it may have helped her make the adjustment after seeing it. Even though they don't remember, the experience sometimes does make an impression.
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@ghphotog , today is February 1st, your potential move-in date for your DW. I’ve wondered how you are doing and if you’ve moved ahead with it. I moved my DH to MC 4 days ago. My emotions are on a roller-coaster ride. I am part of a research study, and as part of that have a Care Team Navigator that checks in with me monthly who works to tie in all our Drs, hospice, etc communication to bridge it all together. ANYWAY, she contacted me the day after placement, when i was raw and panicking….she said a couple things i wanted to share with you and anyone else facing placement.
”I know of no caregiver that feels like it was immediately the right decision”
”Making right decisions can actually feel awful”
This calmed me a bit. I accepted that something had to change, i had to try something different for the love of my DH. I will give it some time. The change has the potential to improve my DH quality of life. No-change would have zero potential for improvement. Time will tell.
PS I’m in support of any decision one makes in this situation.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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