I'm Struggling

White Crane

I'm not doing well. Physically, my weight is too low...not quite 90 lbs. I'm in physical therapy for a partial tear in my right rotator cuff and a possible pinched nerve in my neck. Both of these have been brought on from caring for my husband. I'm sorry, this is hard for me to write and I don't know how to express it. DH is getting more confused all the time and his legs are getting weaker. He is having a hard time going up and down the stairs and our bedroom is on the second floor. I can't afford a stair lift for him so have been thinking about putting a bed on the first floor. My kids are divided about that idea. Mostly they are saying it is time to place him in memory care. Some of my friends are saying the same thing as well as one of his sisters. That is the struggle. I'm being pulled in too many directions. One close friend says it is my decision and that I will know when it is time. That's just it. I don't know! What I do know is that I am scared and worried. My whole world seems to be falling apart and I am helpless to hold it together. I'm crying easily and feel tense inside. When I look at my husband, I feel a deep and abiding love for him along with a deep sense of sadness. The tears are starting to come as I write this. My heart is broken beyond belief and I feel like I'm drowning in sorrow. I don't know what to do but I know something has to be done. Yesterday I heard my husband say very quietly, " I don't want to go to a home. I wouldn't do well there." This only adds to my sadness. I'm crying now and need to stop.

Brenda

Ed1937

Brenda, I'm so sorry. Struggling with this decision is typical. " I don't want to go to a home. I wouldn't do well there." I hate to tell you this, but you've done enough, and hearing that just made it harder for you. You know it's time, and you're probably asking for someone here to tell you that you should tough it out for a while. That is coming from your heart, not your head. I don't think you will get that response here. Your health matters more than his, and if you continue on, he will be placed by other family members while you are staying somewhere other than home, trying to get your health back. I'm sorry, but you know it's time. We'll still be here for you. Please read this thread. https://alzconnected.org/discussion/61198/it-just-doesnt-matter#latest

Caro_Lynne

Brenda, I feel the pain in your post, so sorry for where you are. Please put your health first. Maybe a respite stay to see how it goes. As Ed said, we're here for you xo

harshedbuzz

@White Crane

Ultimately, this is your choice, but I would not ignore the counsel of those who care about you.

Your children are going to lose their dad to this damned disease; it would not be fair for them to lose you as well. My own mom pushed back on my suggestion that it was time to place dad. He was not an easily managed PWD; he needed a well-rested and trained team not an 80-year-old woman with a host of medical issues.

In trying to keep him at home she neglected her own care. She did finally place him after I bullied her into it. I presented it as her only chance to decide which MCF he went to as I would place him in the first available SNF if she were to be hospitalized or die.

In the months after he died, she ended up in the ER twice. The first was a COPD exacerbation with out-of-control HBP and the second was a loss in vision caused by the death of an optic nerve from the aggressive treatment needed for the HBP. The latter issue means she can no longer drive and while she lives a mere 1/4 mile from a lovely shopping center with most everything she needs (grocery, pharmacy, bank, Talbots, Chicos, hair and nail salons, several restaurants) she needs rides to her many doctor appointments, PT and no longer has the freedom to go thrifting or indulge in other kinds of retail therapy. Not only doesn't she have the freedom to live the Stage 8 she wanted, her decision to not place dad sooner has hamstrung me at a time when DH and myself should be free to enjoy our retirement.

HB

FTR, my dad was very adamant about not being "sent to a home". He talked about it constantly. He even refused to get a POA or do any trust planning when suggested by both his CPA and attorney. Despite this, he didn't make a plan to avoid placement by buying LTC insurance to make that happen.

When he finally did go into MC, he settled much more quickly that I ever expected and he was cared for so much better than my mom was able to manage. Best of all, she could just be his wife instead of spending all her time trying think up fiblets to get him to submit to care.

CStrope

Brenda I feel I am in a very similar point in this mess, except for me it's gaining weight not losing it! I even have the rotator cuff situation going on. Every week I have someone tell me I need to place DH, that it is time, but why don't I feel that?! I too always thought I'd know when the time is right, but I just can't seem to get myself to that point.

I lost my mother 24 years ago. I pray to her every day to give me strength, and to help me see when I need to make that decision. She hasn't chimed in with any "sign" yet so I guess I still hang in there. I know that sounds crazy, but it's where I'm at.

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Quilting brings calm

It’s past time. Placing him is NOT something you are doing TO him, it’s something you are doing FOR him, you, and your kids. The kids have already lost the essence of their dad- they don’t want to lose the essence and the physical you. You aren’t throwing in the towel and abandoning him- you are getting him the care you can no longer provide. You will still be doing a lot for him. MC takes care of his physical needs ( food, drink, shower, dressing etc) you will still be doing a lot for him. You will just be able to get some rest and peace and you body won’t be ravaged.

ghphotog

I feel your pain and heartache. We all are in this struggle together. I also need to seriously consider placing my DW. Year after year and day after day of her emotional outburst, the sundowning, the crying all the time, constantly having to tend to her every need and it's a little bit worse every single day and although I care very much for her as my wife, it wears on you after a while. She is somewhere in stage 6 I guess. She is terrified all the time because she knows something is wrong but doesn't know what. Every minute of every day I have to support her emotionally and reassure her I'm here and I'm not leaving her alone. She pleads with me, with terror in her eyes, not to leave her or put her away.

I swore before God on our wedding day that I would love her in sickness and in health. I've promised over and over, day in and day out, through the last few years, that I wouldn't ever leave her and breaking that promise will be the hardest thing I've ever done in my life. Even though I'm somewhat young, 62, my health seems to be taking a beating as I sense it in my body and mind.

I say all of this to let you know that we all fully understand the struggle. We all understand the internal conflicts of being a caregiver to the one we love and sacrificing everything, even our own lives to live up to our promises. At some point it's just out of our hands and the decision will be made for us by circumstances beyond our control. That's how it was with my mom. I felt and still feel horrible about placing her but there was no other choices available.

loveskitties

Brenda, as hard as it is, you need to stop thinking with your heart and think with your mind.

Of what value will you be to him, both physically and emotionally, if you get yourself in a position of being hospitalized or worse? The answer is "NONE".

Unless the Memory Care facility is a great distance from your home, you can be with him as many hours as you wish after the initial transition. You can still have meals with him. You can even do his laundry if you wish.

It is not like the olden days where a patient is admitted and the family must give up all contact.

Please, please...do what will help improve your own mind and body so that you can still spend as much time together as possible.

Hugs

Mint

Brenda I’m so sorry.

CindyBum

I'm so sorry, Brenda, but agree with the others that this feels like the time. I remember it so clearly with my FIL and MIL, who both had dementia, and what a difficult stage it was for their children to walk across that bridge of accepting that it was time to put them in memory care. The good news for all of them? While neither parent was happy to be moved into memory care, they both adjusted, their kids got to return to being their children, and not their caregivers. It was a huge relief for all of them to get out of that loved-one/caregiver place.

I'd add. Perhaps you could also benefit from a low dose of an anti-depressant. I'd always been resistant to the idea of an anti-depressant...I'm very midwestern and "suck it up and get over it" is pretty much in my DNA. But, I could not stop crying and finally broke down for the lowest dose. It helped me immeasurably. I still cry, but I can control it a bit more and actually think clearly even in my sadness.

Best of luck to you. We're here for you.

Ed1937

Brenda, I'm giving you a link to a video that I just watched for the first time. I think it gets to the heart of your decision. https://www.youtube.com/watch?v=F6_0coly0Yw

gampiano

Brenda,

While you are making decisions, Get a bed downstairs and put your husband there. Your children don't have a say in this matter - You are the boss here. As soon as my husband fell in the upstairs bedroom, and i had to have the fire department come at 2 am to pick him up , and carry him down the stairs, i made the decision that he would never go upstairs again. He is down on first floor, and yes, i had to re arrange all the furniture. I put baskets with some clothing , socks , etc . down here and that's where we are.

At least , while you are investigating other options, your life will be a h...ll of a lot easier with this arrangement.

Have you investigated Hospice care? They have literally changed my life. Today a hospice volunteer came and sat with DH for 2 hours while i took care of myself. This past friday my DH fell again and we're getting a hospital bed tomorrow.

Please ...now is the time to put yourself and your needs on the top of the list

Maureen

M1

Brenda i do know how agonizing this is. My partner always said she'd rather be shot, but we have struggled through 18 months of MC that are still not easy, even though I can visit now. We did not have the size differential that is affecting you.

Unless hospice is an option, i don't see how you can keep him home. Will keep you in my prayers.

Beachfan

Brenda,

I am so sorry; I have been where you stand. I agonized for two full years over a placement decision. I researched facilities, used COVID as a deterrent for a solid year, posted my woes, pros, and cons on this board, received comforting advice, all the while losing “myself” in the bargain. Meantime, my kids were mumbling and plotting in the background. I arranged for a 30 day respite for DH and on the day we finalized the plan, my son, the oldest and biggest one, in the parking lot outside the MCF announced, “Mom, when we drop Pop off, we are NOT picking him up after 30 days.”

In retrospect, it was the only sensible path. I was useless to the kids and grandkids; my every waking hour was devoted to caring for DH for over 11 years. I didn’t love DH any less after placement; I didn’t abandon him; I loved him more. He no longer knew me or the family, but I could sit quietly with him, talk to him, feed him, hold his hand and take him walking. No more worrying about his every move; I could just love on him for as long as I had him. He lived at the MCF for 17 months and passed quietly; I miss him every day. Listen to those around you who have your best interest in mind; your heart will follow, I promise.

Denise1847

Dear Brenda,

You are not alone, as you can see. This disease makes the caregivers sick in every way. I have had all kinds of health issues, which have been triggered by stress. My doctor put me on a low dose anti-depressant, and it has helped. Please consider talking to your doctor about this. Also, find a good counselor to talk to. You are grieving and need support.

Like you, I don't want to place my husband. However, I know that I may not have a choice because of his size, my bad back and my health. You definitely need to listen to your children and take care of yourself. He needs the care he can only get with a skilled team. If he had his faculties, he would not want you to kill yourself trying to take care of him.

Please heed the advice of these wonderful and experience people.

Jgirl57

White Crane, I am sorry about your physical and emotional pain. Taking the next steps is not going to be easy and I play out those scenarios in my head everyday . I am starting to have neck, back , shoulder pain. My husband is still able to get around, but I do most of the heavy lifting, suitcase management, lifting groceries, trash, laundry , driving( short and long distance ) and the sheer stress of it all. I hope you can come to a decision ,but in the meantime a downstairs sleeping arrangement is for sure a priority. Sending hugs to you.

Dio

Brenda, it's time. Don't let this disease take two lives.

Joydean

Brenda I’m so sorry and I have to admit I understand where you are at. My dh has progressed rapidly in the past 2 weeks. Physical he’s as healthy as a horse, he’s 6.4 and weighs 195 pounds. Like you I’ve lost weight and my bmi is 13. My doctor gets on to me and tells me I have to gain weight. I also found out last Friday I have Addison disease, my BP drops from 10 to 20 points every time I bend over. I did pass out last month and when I came to I was throwing up and my dh was standing there looking at me in the floor and asked me “what are you doing “. My kids tell me mom you are the only one that can make that decision but we don’t want to lose you too. I still can’t make that decision.

Brenda you are a fantastic caregiver and a wonderful person. Praying for you and your dh!

toolbeltexpert

Brenda you have always been there when I posted with a kind word. I know what the stuck feeling is. I know I had to use my head and not my heart, easier said than done. I had a friend from church say that to me, he was impressed that I was basing my decisions with my head and not my heart and really at that time I didn't understand what he was saying but I came to realize it. I hated being stuck. My weight went from 187 to 149. I am now back to around 165.

I want to say I don't know how you do it your a great caregiver, but you need to take care of you now or you will be in worse shape than your dh.

Brenda they say you'll know, I didnt! I knew something needed to happen because I couldn't do it. I never wanted to, nobody does, but doing something "for my wife?" I could do that, hardest thing ever is letting go and knowing its love that drives that decision. Brenda if the shoe was on the other foot,what would You want your husband to do for you if the tables were turn? I am sure he would want you to do the same. That's what love does, it puts the other first.

I hate dementia and I sure can feel your pain, my prayers are for us all everyday for the decisions we make, the things we face, the hurts we feel are all so real. I hate dementia!

Ed1937

The decision will always be yours to make. I would suggest that you read what you wrote when you started this thread, and consider what advice you would give to someone else who wrote it. That might make the process a little easier.

White Crane

Dear Forum Friends, I am overwhelmed with all of your responses and am so grateful for your input, support, and prayers. Each post has been read and re-read many times as I endeavor to come to terms with what is happening. I've also watched the videos and re-read my own post. This morning I feel calmer than when I wrote a few days ago and am thinking more clearly. I have also met with a close friend who took care of her MIL who had Alzheimer's. And I've made a list of things I need to do and places and people I need to call. My first order of business is to buy a bed to put on the first floor to keep DH safe. I am also going to talk to the eldercare lawyer again about finances and applying for Medicaid when the time comes. Calling the adult daycare center and the Area Agency on Aging are also on my list. My plan right now is to keep my husband at home at least through Thanksgiving and see how he progresses. All our grandkids are making a special point of coming for Thanksgiving because they know their beloved grandfather is declining. After that, I will see where we're at. I am also going to call the memory care facility about availability and what I would need to do or buy before admittance. All this is coming from my head even as my heart is still breaking. Thank you for all your strength and prayers.

Brenda

Beachfan

Dear Brenda,

it sounds as though you have done a great deal of soul searching since your original post; I always felt better when I had a plan B (or several) in my back pocket. My heart still aches for you; you are embroiled in such a conundrum. I can’t recall if you ever investigated Hospice; if accepted, your DH would be provided with a hospital bed in short order, as well as many other helpful services. (Check posts by gampiano).

I fully intended to keep DH at home with me until the end; I didn’t. I had a home renovated on one floor, tile and hardwood, wider doorways, large bathroom with accommodations; everything I would need. It served me well until it didn’t. I admired and envied “Lills” and other posters, who cared for their LO’s at home; I probably could have done likewise; I didn’t. That being said, I confess (as I have before) that in the end, I placed DH more for me than for him. But I make no apology, have no regrets, and didn’t love him any less when he was 44 miles away and no longer at home. As Ed said, in the end, the decision will be yours to make. Best wishes going forward; I don’t miss a minute of that heartbreaking time of indecision. 🙏🏻 Praying for you.

White Crane

Thank you so much, Beachfan. I have followed your story and remember when your husband was placed in memory care. I do so appreciate your input.

Brenda

CStrope

Though I have not yet placed my husband, I agree with Beachfan. I have been saying to everyone that asks me when I will place DH that when I do it will be because it is best for me, not for him.......and that makes me sad

Ed1937

Brenda, you sound like a different person today. I'm glad for you. If he does well through Thanksgiving, I can easily see this carrying through until the start of next year. That is not necessarily bad. I hope everything works out well for you.

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M1

It's interesting Brenda-one of the very nice caregivers at our MC yesterday said to me that depending on the pay, she would love to help me bring my partner back home. I've had the same fantasy-and boy, her saying that stirred up a ton of ambivalence for me. I wish i could swing it-but i don't think could. First of all, I'm so private that i don't think I'd want someone here 24/7. And even though I know she'd love it, i don't think I could go back to the constant vigilance i had to have ( remember finding her downstairs with no lights on trying to feed the cats at 2am). Additionally, i think she'd be so territorial about being in her own space that she would be even less likely to accept help from others than she is now.

Long way of saying, i don't regret placement, even with how difficult it's been. It was necessary then and it remains necessary now. Just hoping that perspective may help you.

Joydean

Brenda glad you are doing a little better. Sounds like you have put a lot of thought into the things you feel need to do done. Praying it all works out well and you and your husband. I have to say I didn’t see any plans on taking care of you. Easy enough to say that but I know it’s harder to do. Do try and get some rest! Prayers for you both!

Elshack

I am worried that you are 90 lbs and are having PT for your physical issues. Caring for your DH will not get easier as time goes on. I hope you can investigate the Memory Care facilities near you and also talk to your lawyer to see if you can afford that. None of us wanted to put our loved ones in memory care but if your health worsens you may not have a choice. Best to have Plan B ready to go.

harshedbuzz

@White Crane

Brenda-

Have you toured and decided on a facility yet? If you'll be applying for Medicaid, it will limit your options and depending on where you live there could be waiting lists. You don't want to put this off and find your choices further limited because you didn't put him on a wait list.

Another caveat, many PWD no longer enjoy being surrounded by people. In the early and middle stages dad still enjoyed a party, but by the later stages special dinners were torture for him. He didn't like "sharing" mom's attention and he couldn't follow conversation. His last Thanksgiving before placement, he was outright offensive trying to get us all to leave-- and we're a small family (my niece and her DH, my DH and adult son and me) and not boisterous by nature. He eventually toddled to his bedroom to get away from us.

Be mindful of the tendency to put off placement until after a special date. I found my mom didn't want to place before Christmas (he was unhappier at Christmas than he was at Thanksgiving even though we did brunch which was his best time of day). Then it was not until after the Superbowl. Cobbling onto what @Victoria2020 said, MCFs do recognize holidays and many even have a smaller private dining room that can be reserved for family functions like holiday meals or birthday parties. Ironically, the only picture I have of dad smiling in the last 10 years of his life was taken at his MCF's Valentine's party when he was singing along with the DJ.

HB