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My husband has had terrible back trouble for 8 years, the worst being since 2016. He has had surgery that didn't work and is pretty much in pain 24/7. He fell on May 24 and sustained a compression fracture in his lower spine. He was just feeling a bit better from that when he fell again on Aug 4 and broker his left femur. After surgery and a short hospital stay, he was transferred to a rehab facility for physical and occupational therapy. Of course I can't be with him at all, but do window visits twice a day.


He HATES it there! He keeps asking me to take him home. I was barely able to care for him before the broken hip, but I know for sure I would not be able to care for him now since he can't get in and out of bed, or to and from the bathroom without major assistance. He's a big guy, my back isn't in the best shape, and I'm 69 years old. I KNOW I can't do it.


He called me late tonight and INSISTED that I come to get him! He needs more time in the rehab facility, but he's so depressed, and so angry...I just can't make him understand why he can't come home.


I really don't know what to do. My heart is aching for him, I'm scared to death. I don't want him to give up and die. I'm terrified for us both.


Any advice would be so very much appreciated.

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I’m so sorry you and your husband are going through this

Being quarantined and isolated from other people seems to exacerbate whatever issues we have normally whether it’s pain, confusion, stubbornness, etc.

The advice you’ve received so far has been excellent. He is where he needs to be until he is strong enough to be at home. Try to remember how bad it was when he was home and you were so worried about his falling.

Remember how likely it is that he would fall again if he went home too soon, perhaps damaging you as Well.

I'm sure you have already thought of these things but sometimes reminders from several other people helps me.

Virtual (I am beginning to hate that word) hugs to you!
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Laugh to keep your sanity
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In the same situation right now. My mom says "Take me home with you." I say "when the Dr says you can." She tells staff to call my other sisters - I'm POA & did not give them sisters numbers. She ordered staff yesterday to call my other sister. Staff said "I can call (me)" and she refused while adding "she put me here!" When staff told me I reminded her "mom, Dr put you here & when he says you can leave....then we"ll go." She stops her arguing & I'm no longer the bad guy. Dr's handle this all the time. Tell your hubby. "When Dr says you can go.....I'll bring you home." & change the subject.
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I'm so glad! Please keep in touch. Best, Barb
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Jdawn20 Aug 15, 2020
The roller coaster - One day husband is up, the next day he's down. After lots of talking by me and the physical therapist, he says, "I guess the only ticket to me getting out of here is doing the physical therapy." YES! We chat about that and it seems his thinking is clear about that. He will say "I can do that." Even when I mention that it will likely take at least two weeks, he says "I can do that." I feel such relief that he finally understands.

Then the next day he calls to say he can't stand it another minute and he needs to get out of that place right now.

This dang COVID thing complicates everything. He hasn't been able to even leave his room since he got there because new patients are quarantined for a bit. He hurts. He's bored. He's lonely. My heart aches for him. And I can do NOTHING to help.

When I visited yesterday morning, he looked and sounded so good and we talked about life in general. He asked about family and friends and our dogs. He misses our dogs so much. One in particular who is always on his lap. He was clear and I even got him to laugh a time or two. We talked about physical therapy again and how important it was that he participate. It was good.

Then last night he called me late. He has been sleeping and when we woke, he was having a hard time figuring out where he was, where I was, just what was going on. He was really freaked out. Oddly enough we had one of the longest, most coherent conversations to date. I'll bet we talkedfor over 30 minutes. It was so nice, and was a comfort for both of us. And THEN he tells me that he doesn't know how he managed to get from the bed to the wheelchair on his own, but he did it. WHAT??? My heart is in my throat as I beg him to PLEASE not do that on his own! "Isn't that why I'm doing physical therapy?" he says. Angry because I'm asking him to ask for help, then calming down as I suggest he look for the call button to get an aide to help him back into bed.

The ups and downs are exhausting. My own mood of being worried about him, being angry when he does something like trying to transfer on his own, feeling resentful when HE gets angry and says I'm "lecturing" when I try to explain why he shouldn't, being so, so sad about the entire situation. And the guilt about any of my feelings when I know that he must be feeling all of that and more. I feel so weary. And scared every day.

I try to keep busy...goodness knows there are many things to do around the house and yard. Yet I have little motivation to do anything but worry.

I'm sure y'all know the feelings. It really helps to know that others know how I feel. Thanks for listening.
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Please tell him that you are so sorry, but you cannot do that. Tell him that your heart aches for him, but you cannot do that. He doesn't sound like a "giver-upper" to me overall. Death is a possibility for him, and for you if you take on more than you can handle. Not everything has a good answer. Some answers are sad and worth grieving, worth weeping, worth raging over. But that will not change the facts you already know. You are not a Saint and you do have limitations.
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Talk to him firmly and define goals he needs to be able to demonstrate to you before he can be discharged home. If you cannot be there to witness those goals, set up a care meeting or relay your concerns.

It’s not want he wants, it’s what he needs.
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Its so great that he has a good relationship with the PT!

Lack of oxygen certainly can cause confusion.

A good psych eval will be able to distinguish between the temporary confusion lack of oxygen can cause and the sort of lack of insight that might be caused by true cognitive decline.
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Jdawn20 Aug 13, 2020
He mentioned to me last night that he wanted to kill himself. It rattled me to the core. I talked to the administrator this morning and she is going to have the doctor go in for a psych eval.
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Jdawn, is it the bad back that caused the falls or lack of walking aides? From the injuries you described, no wonder he needs some rehab. He is voicing his wish to go home - he does understand he really can't just yet doesn't he? Or do you suspect he has some lack of insight regarding this?

Is the stubbornness refusing to use his cane/walker new?
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Jdawn20 Aug 13, 2020
All of the above, but for sure his not using his cane or walker. He is just SO stubborn. I have talked to him about this until I am blue in the face and told him what would happen...that he would have to go into rehab and I would not be able to be with him.

For some reason he has refused ALL physical therapy from the start, even though ever single doctor (even before the surgery) has told him that it would be THE best thing. I don't get it. It's fine if someone cuts on him, or sticks needles in his back, but he just WILL NOT do the one thing that takes HIS OWN DETERMINATION AND EFFORT, and would likely help SOOOO much! It's so frustrating!!

He was using the cane for a while after his back surgery and the cane or walker after the first fall in May that resulted in a compression fracture...for a time. But for whatever reason, he figured he was able to walk around without them no matter how much I urged him to.
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Isn't a Hoyer lift a 2 people transfer. My opinion, he may be too much for you to handle now and thats what you need to tell him. Tell him there is no way you can physically take care of him. If he can't do it himself, you cannot support dead weight. My husband is 5ft 10in and weighs over 200lbs. I am 5ft. No way i could care for him if he needed help getting up and down.

For now, I would say he is an unsafe discharge. Maybe you can get the therapist to talk to him about how it would be hard for you to care for him. He needs to get stronger so he can do for himself.

Why does he fall all the time? Stubborn?
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Jdawn20 Aug 13, 2020
He is very unsteady on his feet, with poor balance. Amid my objections, he decided he no longer needed to use a cane or his walker. Grrr...so yes, stubborn.
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There should be access to a psych consult either through the facility or your choice with facility approval, and he may benefit from an assessment, so go for it, as soon as you can.

When you’re with him through the window, focus on ANY tiny bit of progress he’s made. Do the caregivers and therapy staff realize how depressed he is? Sometimes a smile and a wink from a PT or OT can make a big difference, but make sure that they know that he needs a little extra TLC.

Are they on top of his blood sugar? You and he know that shifts in sugar levels can cause mood shifts as well.

Have you asked him to tell you how he plans to be taken care of at home? Will he let you involve him in a plan for home care? Are the OTs doing ADL activities that he can relate to his future ability to help caregiver(s) ?

Are you able to tell him firmly and lovingly that you are UNABLE to assume full responsibility for his return home before he is able to help himself as much as possible?

Finally, if he called you “late tonight” is it possible that he is not able to realistically grasp the severity of his situation? He needs to know that you are doing all you can for him, but that YOU need to be able to keep yourself well in order to prepare for his potential return home.

And you DO need to keep your welfare in mind. Are you eating well, taking mini breaks, little walks, phone calls to those close to your situation. Whatever small things that can lift your spirits and refresh you, however briefly.
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Jdawn20 Aug 13, 2020
I did verify that they are checking his blood sugar, and the numbers are good. Yes, I've asked how he thinks I can care for him at home, but he says between the two of us the equipment available, we can do it. I don't think he does fully understand the severity of the situation, nor does he grasp my limitations. Sometimes his thinking is not clear, and even when it is, he is rationalizing the situation in order to be able to get home.
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No.

I know you want to be at home. I want that too.
But you need to get stronger first. I am thinking of you every day & will phone you. Try to keep positive.

((Hugs)) to you Jdawn. He is where he needs to be.

My friend's Mother just gave in to that very 'take me home' demand last week. He could not move from the bed for 24 hrs, tried, fell. EMS called & back to hospital with fluid on lungs from lying flat, dehydration & now a head wound. Now she feels bad she said yes.

It takes courage to be firm but by saying NO to home (at the moment) you are saying YES to more care plus his & your safety.
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Jdawn20 Aug 13, 2020
Yes, it's SO hard to keep telling him no. He is just so unhappy. SIGH-
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Please accept that you can’t make him happy and stop even trying. You can do your best to plan for good care, but happy is over for him and you can’t fix that. Don’t get into long, looping conversations about coming home or anything else that you can’t change or fix, it will only frustrate you both. Seek medical advice about treating his possible depression, who wouldn’t be depressed with all he’s dealing with? Talk to therapy staff about the realities of bringing him home and what that would look like, don’t consent to him coming either now or later without knowing what it will be like and what you’ll need to have in place. I wish you the best
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Jdawn20 Aug 13, 2020
Thank you for driving home the point that I really can't make him happy, no matter how hard I try. It's just a terrible situation all the way around. I had a great conversation with the physical therapist, and he said that Lon is not even close to being able to get around as he needs to be to come home. Lon really likes him, so I've asked that with each session he speaks to him about where he is now and how far he needs to get before being released.
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JDawn

i feel for you so much right now (((Hugs)))

I know how painful this has to be for the both of you❤️

I can only share my experience. I care for both my 84 year old husband and my 29 year old developmentally disabled daughter.

I love both of them Sooo much I don’t want them to be in a facility.

My husband has had to be in rehab many times and many times I stayed by his side day and night through hospitalizations and rehabilitation stays.

I am exhausted as I have been doing this for 5 years+.

Please understand as I am coming to this understanding personally...no matter how much we love them we can’t take away the pain, cannot make them better and when it comes down to it the care we provide, especially if we are doing it alone will shorten our life.

If my love alone was enough to sustain my ability to provide care then everything would be fine.

Please do not bring him home yet. It will be detrimental for you both.

Right now he is in a place where they have the right equipment, right professionals to care for him, staff and nutritionists to assist him. At home it will just be you.

You alone without a team are not enough.

I woke up this morning exhausted after being up with him twice last night and all the night before. My time is not my own and all my time, energy, attention etc is used up everyday...caregiving.

It has taken a huge toll on both my physical and mental health.

My big wake up call was tonight when I fell asleep boiling eggs only to be awoken by him calling for me to go to the bathroom (and smoke in the house and a scorched pan still on high-he didn’t even notice the smoke). Thank God for protecting us!

See about getting him a counselor or rehab psychologist to help him during this difficult time. Please know that insisting he stays in rehab may be saving both your lives.

God Bless you and keep you during this difficult time ❤️
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Jdawn20 Aug 13, 2020
I can't even imagine how difficult this has to be for you being caretaker to TWO...and for so long! I'm so sorry. It must take so much physical and emotional effort.

Thank you so much for sharing your story and for so beautifully expressing the truth of caregiving and its toll on those who do it. I am deeply touched.
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Oh boy, Dawn! Please don't beat yourself up!

Is his depression being treated? And what's up with not wearing the oxygen?

You are his advocate right now. Tell him he has to help YOU to help him!

((((((Hugs))))))).
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BarbBrooklyn, I'm sure he is depressed. He has had no quality of life for some time. And he is sometimes confused. His oxygen sats are generally low because he won't wear his oxygen 24/7, only when he is lying down.

We moved to a one-level home in January because of his mobility issues. I haven't thought of a Hoyer lift. Didn't think I'd need that at this point, but maybe I will. My husband's brother recently died, and his wife still has the Hoyer lift. So that's possible.

I was going to call the hospital case manager tomorrow to see if she had any ideas, and see if home health has assistance on this level. We had home health after his last fall, and husband was not cooperative. He wouldn't do the PT which is how he ended up in this predicament. And we talked about that! About if he hurt himself again, he would end up in rehab and I wouldn't be able to visit him.

I feel like a traitor. I feel so incompetent. I'm just so, so scared.

Thank you for the hugs!
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cherokeegrrl54 Aug 13, 2020
In NO way are you incompetent!!!! Of course you are scared, who in their right mind wouldnt be.... however, you have to take care of yourself too. I say yes to the psych eval asap. Also you will need to make it clear to him, with the help of his ot/pt people, that without participating in his recovery you cannot do it all. Please remember this, 35 to 40% od caregivers die before the ones they are caring for. You deserve a life too, not just him. And you have your daughter to help as well. And we are not responsible for anothers happiness, that can only come from within themselves. I wish you the best in this very difficult time. Prayers and hugs being sent to you💕💕💕
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Just say no.

That policy has got to work for something right?
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Jdawn20 Aug 13, 2020
Ha! If only it were that easy. But I needed the laugh.
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JDawn, big (((((((hugs))))))). This must be so hard on you both.

Short term, I would blame the doctor. Say that he can't come home until the doctor says that it's safe for both of you.

Is there any degree of cognitive impairment or depression going on here? It seems like it would be obvious to him that if he is not yet mobile that it is simply not practical for him to come home.

Perhaps the best thing would be to consult with the OT and PT staff at the rehab (via Zoom if no in person is allowed yet) about what needs to get set up for him to be able to come home. Is your place all on one level? Have you looked into a hoyer lift? There are things that can make this possible for both of you, but you need some time to get ready.
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Jdawn20 Aug 13, 2020
I'm working on both. Hopefully the psych eval will shed some light on things.
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