I have a headache…
I can only begin to imagine!
=sheila
If he were in a facility, he’d be restrained and/or sedated in his bed/wheelchair/recliner all day and night to prevent falls, lying on the floor, getting into mischief, and peeing/pooing wherever. They aren’t staffed for one on one supervision/assistance 24/7.
I kept him in his ER bed by hand when he was awake today. He would’ve climbed out.
I have a headache…
It sounds like he would have gotten out of the ER bed except you had to restrain him by encouraging him not to get out or using your hands to help him stay put. It has gotten to the point where only you can determine how much and how long you will be able to help him. It seems like there are three options.
#1 - Things stay the same at your home and you try to afford additional help to cover more hours. When you are alone keeping the Fire Department on speed dial would be a good idea. Hubster’s propensity to climb out of bed/recliner, crouch or fall to the floor to observe flooring grain patterns or tile grout or sleeping on a hard surface comes with a bodily price for him. You continue to clean up after his pee and poo locations and keep the washer and dryer busy. Hopefully you will be aware when he is peeing and not slip on the floor because you didn’t hear him. You will need to be okay with him refusing to take his pills, eat or drink.
#2 - Contact Hospice and find out what they can offer now that he is in the program. Perhaps they have some ideas or organizations that could make your life easier. Since he doesn’t communicate, understand or follow directions it is possible that he doesn’t have awareness of his situation. The physical freedom he has around the house could be overwhelming internally or mentally and he doesn’t know how to deal with it. Speak with his Neurologist and get some ideas of the best way to proceed while in this stage of his journey. I am sure she/he has seen it all before and can advise you.
#3 - Look at some care facilities and find out what they can do and why they do it. While you are upset about the idea that your husband might be restrained in a bed, wheelchair or recliner it may prevent him from falling or hurting himself. Find out what the nursing home/memory care facility procedures are for a patient at various stages of dementia. Find out if you can come to visit any time you want so that you can check on him.
You are not able to provide one-on-one “constant supervision” 24/7 even with aides. You need uninterrupted sleep and time for other activities to keep your sanity. Since he will continue to decline I ask you to think about what you can really do. Caring for him as long as you safely can shows what you are made of. If you are not able to function and start having health issues then there needs to be a plan in place where he will be safe.
Robyn
8 Likes
I don’t agree that’s best because I don’t think safety is paramount–I think happiness is paramount. I would rather he fell and broke his neck and died sooner at home than lingered for years sedated and restrained in a facility. It’s what I’d want for myself/my children/my grandchildren in his shoes. OTOH…
He woke up enough that I was able to feed him dinner while he was lying down. A tribute to his chewing and swallowing skills that he never choked. And he took his pills. Went back to sleep briefly, then got up, presumably to pee, but was unable to pee. So I checked his Depends–yup, a poo. Carefully removed his Depends, cleaned his bum, and dumped the poo in the toilet while he stood there, But before I got back he made a big puddle on the floor. sigh. He refused to get back in bed after and sat in the wheelchair, eventually slumping down in it as if it were his recliner. Till he ended up sitting on the floor, refusing my help to get back up and in bed . But as I typed this, he got into bed on his own accord.
But then got back up and I could tell there was more poo. Cleaned him up again. Had to use my super-human strength to get him back in bed (too bad I already took off my Apple Watch–syrely it would;ve been impressed!!). So. He’s in bed…feet handing off the end, but I’m not strong enough to pull him up from an angle against cotton sheets. Perhaps I should spring for satin…
Smells poish in here…
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#1 - Things stay the same at your home and you try to afford additional help to cover more hours. When you are alone keeping the Fire Department on speed dial would be a good idea. Hubster’s propensity to climb out of bed/recliner, crouch or fall to the floor to observe flooring grain patterns or tile grout or sleeping on a hard surface comes with a bodily price for him. You continue to clean up after his pee and poo locations and keep the washer and dryer busy. Hopefully you will be aware when he is peeing and not slip on the floor because you didn’t hear him. You will need to be okay with him refusing to take his pills, eat or drink.
==I am aware. I can’t afford more help. It’s a strain to pay for this much. One of the EMTs MIL is going through this. She has dementia and her husband cares for her with a little help at home. Can’t afford enough help, too well off for govt help. Apparently this is more common than even I knew. They sent the social worker to talk to me, but the only options she has cost as much as my aides, and I really like my aides.
#2 - Contact Hospice and find out what they can offer now that he is in the program. Perhaps they have some ideas or organizations that could make your life easier. Since he doesn’t communicate, understand or follow directions it is possible that he doesn’t have awareness of his situation. The physical freedom he has around the house could be overwhelming internally or mentally and he doesn’t know how to deal with it. Speak with his Neurologist and get some ideas of the best way to proceed while in this stage of his journey. I am sure she/he has seen it all before and can advise you.
==he never left the bedroom today and still had difficulties. Have talked extensively with hospice already. Medicare pays for 2 hrs of help a week, period. They are bringing a hospital bed at my request. We’ll see if that works (just a guess on my part, but the aides will like ti for sponge baths). I may be abvle to get another wheelchair to keep in the car/garage. Spoke to his neurologist 2 days ago and won;t see him again for a couple of months, but I can communicate via MyCHart. All anyone says is get more help or stick him in a facility. Neither are options for us.
#3 - Look at some care facilities and find out what they can do and why they do it. While you are upset about the idea that your husband might be restrained in a bed, wheelchair or recliner it may prevent him from falling or hurting himself. Find out what the nursing home/memory care facility procedures are for a patient at various stages of dementia. Find out if you can come to visit any time you want so that you can check on him.
==I have looked at the facilities in my town (and a couple more have cropped up since then). Even if I preferred that option, none are affordable unless I knew for certain he wouldn’t last more than a year.
I would agree with the sentiment in general. If I had my marbles, I would choose that.
But is he happy? He fiddles with stuff, poos himself, wanders around aimlessly, takes an interest in wood grain. But is he happy? Does he laugh or express any joy? Or is he just on autopilot, oblivious to everything?
I can’t know remotely. That’s why I’m askin’.
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I’m profoundly relieved that he didn’t injure himself in these kind of collapsing falls he has begun having. Have you let his neuro know what happened today? I guess all of today’s test results sent over to him.
But he does seem to have passed a line to a more disabled state. Here you are now getting a hospital bed for him. That’s quite a leap from bed concerns that are limited to avoiding him peeing on the bed that you share. Is there room in your bedroom for the hospital bed? I remember when we got a hospital bed for my dad, and it was placed in the dining room (the table was pushed against a wall). But my parents had live-in aides at that point (Medicaid paid for it). I agree that it’s time to begin thinking ahead, seriously, instead of waiting for things to change and then. And perhaps this is something that you can discuss with the hospice person who comes on Tuesday. I know that hubster’s form of dementia is rare, but the hospice person may still have some sense of what will become appropriate, and perhaps even over roughly how much time.
I hope it’s an uneventful weekend!
=sheila
2 Likes
He’s happy enough to smile back at me, kiss me back, hold my hand, react visibly when I say “I love you.”
Unlike in facilities, I’m never too busy to attend to his needs promptly–ditto his private 1:1 aides. I’m always available to feed him a meal if he needs that. His care isn’t worse on weekends.
Speaking of which, he isn’t going to get meals of the same quality in a facility as at home. I never serve him food he doesn’t like. After 40 years, I know what that is.
At home, while he has 4 caregivers (including moi), he is never forced to deal with a stranger bathing him/toileting him, etc. Well, I hope he’ll also have a consistant person he likes from hospice.
Look. If a parent/sibling were this much trouble, I’d put them in a facility like you did, like I did my mom and brother. But my husband (or child, or grandchild)? Nuh-uh. At least for me, the level of tolerance and devotion is just not the same.
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I’m trying a hospital bed to see if that makes things easier. Maybe it won’t. Also, when the hospice lady told me about their services, a hospital bed was the only possibly useful thing beside 2 hours of aides/week. They seem more geared toward caring for terminal cancer/COPD/heart failure patients (come any time of day or night to help manage pain/nausea/oxygen–none of which is useful for dementia, although once he’s literally dying, I imagine pain might be an issue. My aides tell me pretty much everyone’s in pain in the tail-end game, no matter what they’re dying of).
I will have to move some furniture out of the bedroom into the area between the kitchen bar and living room furnishings–my exercise bike, his dresser, a free-standing mirror. I think…it depends on how long the hospital bed is. I might need to do more serious rearranging if it blocks too much of the hallway w/the closets and passage to the master bath, which is in the middle of a wall.
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At least for me, the level of tolerance and devotion is just not the same.
I totally get that. I do. Hopefully I never have to make that choice (i.e. facility, drugged-up, etc) for either of us. I might have to move us to Oregon if that happens…
The question is whether he is still your husband, or your husband is gone with only a corporeal body remaining. Again, I can’t know. I just go by your descriptions. If he can’t understand language anymore, as you say he can’t, then the “I love you” thing may just be coincidence. Or tone of voice. My guess is tone of voice. Like a dog will react to your tone even if he has no idea what you’re saying.
Regarding the hospital bed…what will that accomplish? He can climb over the rails, so you said. It is adjustable, which could be a plus. Maybe waterproof (and poo-proof)? Just curious. It’s nice that you have the benefit available. Hopefully more will become available as your case worker realizes what dire straits you’re in.
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He’s been sleeping since he last woke up around 4:30am–and now it’s 12:30pm! I wish he’d sleep this long at night! I bet he’s got an overflowed Depends under him.
Glad I didn’t arrange an aide for today as it would’ve been wasted money 
I do have Shaina coming on Sunday (tomorrow). She’ll also be here Mon-Thurs this week. I’m scheduled for a colonoscopy on Friday June 10th when Krystal’s here to drop me off and pick me up and see to the hubster. I feel like I don;t have the mental bandwidth to deal with this now, but I also want to get it out of the way. It;s presumably my final colonoscopy as I think they discurage them after age 75 and that’s just a couple of years away.
PS–hospice has more eqt available than I mentioned, but between caring for my mother and my own broken leg, I already have grab bars and a shower stool. These days I put my feet on the stool to wash them. DH never adjusted to sitting in it.
I was discussing things with my daughter this morning, and she suggested butting the hospital bed up against our bed so he might perceive it as part of our bed. I am concerned about him not wanting to use a strange bed. ANyhow, when caring for him in the bed, I think we’ll need access from both sides, which means moving our bed over, which means exercise bike to the LR.
I hope the railings are high enough to dissuade climbing out and that big bumpers are available to also help dissuade climbing out.
I’m relieved that I can call the Fire Dept any time, as often as I need to. It makes me feel like I have help even when an aide isn’t here.
Ah…he’s waking up at last!
Regarding the hospital bed…what will that accomplish?
I’ve wondered that too. And it introduces something strange into his environment and routine. I wonder if he’ll either refuse to use it totally, or if he’ll climb out and then into the bed you’ve always shared.
=sheila
Re the hospital bed…
Did the person you talked with explain what the anticipated benefits would be? If not, I would try to get them on the phone now and ask. Then you can see if it answers issues you have, or if they’re assuming it would be helpful because they’re accustomed to its value with patients who have to be lifted into and out of bed, and/or who fall out of bed and injure themselves.
=sheila
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He’s happy enough to smile back at me, kiss me back, hold my hand, react visibly when I say “I love you.”
So he is not completely divorced from some basic feelings and responses — to physical behavior, not dependent on words. It’s very moving to hear this. And with this still part of your interactions, that really amplifies your desire to keep him home with you.
And perhaps this is not just for him, but for you too, despite the incredible physical and emotional stresses. You said something recently that expressed a very different feeling tha you normally talk about. Usually, you describe your frustrations, exhaustion, restrictions, worries, anxieties. But recently you referred to very profound emotions—the first night that he was wearing diapers in bed next to you. And you cried, recognizing that you’d never have the future together you had always imagined, and that your beloved husband was disappearing before your eyes. I was in tears, reading that. And I realized that these emotions are part of your burden, a part that you don’t normally talk about.
=sheila
4 Likes
The question is whether he is still your husband, or your husband is gone with only a corporeal body remaining. Again, I can’t know. I just go by your descriptions. If he can’t understand language anymore, as you say he can’t, then the “I love you” thing may just be coincidence. Or tone of voice. My guess is tone of voice. Like a dog will react to your tone even if he has no idea what you’re saying.
As it happens he just ate a good lunch, glass of oj, & a popsicle, and took half of his pills. I gave him a big hug, kissed him, and said, “I love you.” He hugged back and patted me, kissed me, then pulled back and looked me in the eye, smiled and said, “choo choo choo.” Close enough. I’d say he’s somewhere between my husband of old and a zombie/animatronic body. He’s still in there, but not entirely.
Regarding the hospital bed…what will that accomplish? He can climb over the rails, so you said. It is adjustable, which could be a plus. Maybe waterproof (and poo-proof)? Just curious. It’s nice that you have the benefit available. Hopefully more will become available as your case worker realizes what dire straits you’re in.
Wash twin-size bedding instead of queen so maybe it’ll all fit in one load?
Ease of sponge baths and changing Depends in bed (raise up bed instead of bending over our platform bed). Maybe he won’t be able to climb over the rails–I’ll see how high they are. It depends…does this hospice deal with enough dementia cases to have high railings? Maybe I could persuade them to order a few dmeentia-proof beds if they don’t already have them. Also maybe the new sleep med will work better…
It’s too bad he isn’t smart enough to ring a bell for help. I just have to listen for the sound of a creaking chair/bed when we aren’t in the same room.
ASIDE
I never picked up the hubster’s meds at the pharmacy yesterday, so they dropped them off for me just now–no charge…nice place 
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When the lady on the phone listed their services and equipment, I chimed up about the bed and asked for it.
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And perhaps this is not just for him, but for you too, despite the incredible physical and emotional stresses. You said something recently that expressed a very different feeling tha you normally talk about. Usually, you describe your frustrations, exhaustion, restrictions, worries, anxieties. But recently you referred to very profound emotions—the first night that he was wearing diapers in bed next to you. And you cried, recognizing that you’d never have the future together you had always imagined, and that your beloved husband was disappearing before your eyes. I was in tears, reading that. And I realized that these emotions are part of your burden, a part that you don’t normally talk about.
I could list more such…like when the neurologist first said he had advanced dementia, and I thought he was still in the mid-game. And when he said the hubster qualified for hospice, which I associate with near-death. My aide had come come with us and saw me tear up. She took over the dr conversation briefly so I could get under control and afterwards gave me a hug. I cried the first time he acted crazy (keppra). I tear up when used to occasionally try to get out of a locked door. When we were on a walk and he wanted to go back before we even got to the end of the driveway, Or didn’t want to come back.
He’s dozing in his recliner. I guess he’ll only have 2 meals today. I’ll give him yogurt if he wakes with at least 2 hrs before dinner.
He hasn’t peed since he got out of bed (AFAIK), although I did take him to the bathroom after lunch (nuh-uh). I wonder if he’s transitioning to peeing in his Depends like he is to poo-ing in them.
Things to look forward to:
- DD, SIL, grandkids coming last week of June/first week of July
–DS & GF coming in July - Big bro, niece, and her eldest child coming in July
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No peeing yet (other than in his Depends?). I gave him yogurt for snack. And he was unusually thirsty. Got him to take a couple more pills with snack. But as I was fixing dinner, he fell back asleep. Woke up as finished my dinner, now he;s eating his. Broccoli with spaghetti carbonara–which he’s eating without help. I must say, it was awesome (and easy). But what to do with leftover egg whites? Maybe shrimp and snap peas tempura tomorrow?? Ideas?
ASIDE
I never got DH’s license back after the EMTs took it and said the hospital needed it. I called the ER–they don’t have it. Called Charleston EMS dispatch. Can’t help me. They gave me another number. Had to leave a message. I have until June 17 to get DH a new ID or I will need to start from scratch with a birth certificate, SS card…aaarrrgh!
Egg whites? Maybe omelette for breakfast. Add any or all of mushrooms, bell peppers, onion, cheese, spinach. Add a whole egg as needed if there aren’t enough whites.
Drivers license: check with admitting or the billing office. ER may turn everything over to them.
—Peter
I’m sure they have a procedure for a lost ID. Just use that. Usually you just have to pay a fee. You have his SS#, address, DOB, and everything else. Does he have a passport? Probably expired, though.
Not so simple, alas, as his passport long expired, and his license expired on his last birthday, and I only remembered a week or so ago. You have 90 days to renew past the expiry date, or you have to start from scratch–and I have a little less than 2 weeks from today! I have no idea if we have them or where his birth certificate and SS card are (required if starting from scratch). It will be hard to replace them since he can’t tell me where he was born (one of the Boston hospitals, I presume, since he spent his early years in Dedham?). No neither of us is organized about paperwork, but me worse than him.
If he hadn’t gone to the ER on Friday, Krystal was going to help me take him to the DMV to get a new ID (just ID, not license).
Ugh–I don’t need this. And yes, I know it’s my fault–I remembered last year and told myself to deal with his license in late winter, but I didn’t put it on the calendar and forgot about it. He didn’t get a notification from the DMV either (or I mistakenly tossed it unopened?).
Also don’t need:
the hospital bed could’ve been delivered late yesterday, but the guy said he wouldn’t help me move furniture, so I need to arrange moving guys if my aide who’s coming today can’t help me do it. I got the impression from the delivery guy that the bed is very large and doesn’t have wheels or at least is not easily moved 