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He's 76 and has had previous mini strokes undetected (or unreported) but this was a more major one leaving his right side affected. He's been in rehabilitation for 6 weeks in hospital and hasn't made very good progress according to the PT and OT. He's in a wheelchair coming home to a newly wheelchair accessible home with the hope he can progress to a walker through outpatient physio. Not sure what to expect when he gets home in terms of challenges or surprises. Looking for any advice....

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A few months ago, my grandma went from ambulatory to bed bound. Overall, it's not nearly as bad as I thought it would be.

First the sad part. If he hasn't walked by now, the chances of him being able to probably aren't good. The chances diminish everyday that goes by that he doesn't walk. That's what happened with grandma. The PT she got at a SNF didn't help much in my opinion. After I got her home, I was able to get her to stand and take a few steps. But pain from pressure sores and arthritis got in the way and now she doesn't even try to walk anymore. It's hard for anyone who hasn't walked in weeks to walk again. In the elderly, it's very hard to overcome the loss of bone and muscle mass as well as being mentally up to the challenge.

Home PT is useless. Every time we've had it, I just think it's an absolute waste of time. Having said that, I thought the SNF PT was pretty much useless as well. You know what you see in movies where someone struggles to walk again and the PT is there pushing hard for them to do so. That's only in the movies. In my experience, in reality, it's pretty much if you can't do it then the PT will just state that's your new baseline and move on.

For the better than I expected part, taking care of some that's bed bound isn't nearly as bad as I thought. First, get a decent hospital bed. Not that one that medicare is willing to pay for. They will not pay for powered up and down. They consider that a convenience feature. IMO, that's the most important feature. The last thing you want to do is break your back with the hand crank. We ended up getting our own. It's really not that expensive and would have been about the same as paying the difference to upgrade the bed medicare would pay for. Not having to deal with the medicare bureaucracy is priceless.

Caring for someone bed bound isn't nearly as bad as I imagine. Here's the key, roll don't lift. Rolling someone is easy if you have a pad or sheet under them. Then just roll them by pulling up on the sheet or pad like you are making a sushi roll. Everything from changing a diaper to changing the sheets to changing clothes I can do in 2 or 3 rolls.

As you would think, the physically hardest part is doing the bed to wheelchair transfer and back. Yes, there are lifts and boards you can use to assist. I just grunt it out by dead lifting. A gait belt is key to all this. Once you get the hang of it, it's not that hard at all. Of course, the more you do it the more muscle you'll build and the easier it becomes.

The anticipation is daunting. That first day will be challenging. But you will get through it.
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First YOU are an amazing person and God Bless You He is very lucky that you love & care for him. 2nd you are not God or a Dr so you may learn some things by trial and error.Remember the main things! You cannot & should NOT do all this by yourself. get visiting Nurses to help insurance should pay all or some! Next family, friends, church, neighbors, prayers........
You have to arrange feeding, bathing...dressing, bathroom issues and the nurses and Drs should help you!!!!!Do not be surprised if he gets mad, lost, yells, cries....play his favorite music, TV shows together, pictures of family members......sports events he likes..............If you get no help plez look up my email iF you want I am NOT trolling for patients as some jerks in the past have said..I had 4th stage colon cancer , 4 months in a coma and died I just help others because I am blessed to be alive & with my family after dying!!!! Bless You It will work out SLOW but SURE REALLY, believe in God and Yourself!Dr Jack
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Position changes: sitting up from lying down, moving from to another chair/bed/toilet, and sitting from standing will be hard to do. You will need a gait belt (kind of like a judo belt that wraps around his middle) so you can use it to assist his changes in position. If he can not help you at all on the affected side, you need to evaluate if you are strong enough to move him. There are other assistance devices that PT and OT can let you know about that can help.
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Maybe need help getting on or off toilet. Help with washing himself.
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JuliaRose Dec 2019
I recommend getting a bidet to connect to the toilet. It’s squirts water that cleans the exterior of the rear end after a bowel movement. It is much more dignified than asking someone else to do it.
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You will have some caretaking tasks to learn for his general health and safety. In addition to outpatient PT, see if there are any daytime post-stroke activity centers in your area. Some Rehab and Medical Systems have ongoing programs focusing on social and cognitive activities that you can pay for after Medicare-paid Rehab is concluded. Also investigate any local colleges or universities that may have rehab activity sessions as part of the education program for students. These may only be once or twice a month, but they may offer another opportunity for social and cognitive rehab.
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Kudos to you. My hunch is the long pole in the tent may be toileting if he is unable to walk. Also, the use of Depends type underwear may be required. Bathing is also a job if the loved one cannot handle it alone.

You may want to purchase a recliner with an electric motor in it and a remote control so he (hopefully he) can adjust his sitting position. Can he speak?

(I ask these questions because I was caregiver at home for two years for my now departed wife after a massive stroke. What an adjustment it was.)

At first I felt like she was often impatient and at times was sharp with her. In a few weeks though, I realized she did not have the capability to not appear impatient at times. So instead of barking at her, I learned to "take the blame" with comments like, " Well you know what a dummy I am. I just don't catch on to your gestures (she could not speak) and so I have to ask a few questions so I understand." She would be amused and happy when I did that.

All in all it was a major adjustment for both of us.

I count the years I spent taking care of her at home and then for ten more years at the nursing home with twice-daily visits to be the pinnacle of accomplishments in my entire life time...

Grace + Peace,
Bob in North Carolina
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Daughterof1930 Dec 2019
Bob, in case no one has reminded you lately, your wife was blessed to have you in her corner!
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You should be trained by the rehab staff on technique concerning how to aid your dad for two reasons. If properly trained you are less likely to injure yourself or you dad. Second, if you hire caregivers (which you should) you will know if they are doing things the safest way possible. Also, if possible, he should make a home visit with a member of the rehab staff to test the modifications made and determine his readiness to return home before he is discharged. That home visit is also a way for the physical therapist to further instruct you with the specific "hurdles" that you will encounter.
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anonymous275053 Dec 2019
Hello Lynina2 your reply to Viomoms enquiry is just perfect. You really nailed
it. Well done.
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My 94 yo mother had a mild stroke last month, she demanded to go back to her home, my brother and I have been trying to get her to sell her house and go into AL, she refused.

So, my brother left (we live in Fl. she in NC.), well she started having panic attacks at night and was afraid to stay alone, calling the EMT's every night or going to the ER. We hired a caretaker and my brother returned to NC, there was no more discussions, we got her POA's and will updated and have now placed her in AL here in Florida.

Mentally the stroke has affected her, she has no fight left, she cannot make decisions and gets her facts all messed up, like her age for example. Beyond that she can still walk with the walker, get up and down by herself and so on.

The irony is that she loves the facility she is in, has made new friends, participates in the activities...and here's a biggie...she is happy with the food!
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My father's stroke was called a mini-stroke and I never went through what you're going to have to deal with.

I did have to clean my DH, and we never resorted to "adult briefs" as he was dead-set against them. I found that diaper wipes were much easier to use than adult wipes.

DH preferred using washcloths and I learned to have a "diaper pail" with dishwasher detergent (I used a Cascade Pod) in it and it cleaned the washcloths better than bleaching. No smell either. Yes, when the pail was full, I washed with bleach to disinfect.

God Bless you today and always.
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I cared for two different individuals post stroke.

the first was a man...he did regain the ability to walk, his speech was somewhat messed up....confusing words and swapping words...I think he was hearing himself say the right word, but his brain was tricking him. This is part of aphasia. He also lost the entire right side of the world. His brain forgot there was anything on the right side. Very odd, but we found work arounds. He was usually friendly and would laugh once he understood the word salad he was saying. He survived almost 5 years.

the other was my Mom. She also regained the ability to walk. For a couple months we were worried about her swallowing...but that came back. Her speech was completely a jumble, swapping syllables as well as words. I have no idea what she understood, or what she heard...nothing she said came out as other than gibberish. We tried writing instead..but she couldn’t ever get more than one or two words written before it would trial off into little tiny scribbles. Except for one day about 4 days before she died. Clear as a bell she said “that is a beautiful picture”. She continued to have TIAs and survived only 10 months
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My mom had several small strokes that she came back from before a huge debilitating one. The main thing we didn’t expect was the depression after the first strokes. She was sad at the changes in her life. Looking back, I wish she’d taken medicine for it. Her mood was never quite the same
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take it day by day. No one knows what to expect. Every day is a new beginning.

What I would make sure of is that more than his stroke and new found life of not walking is not the only thing that is talked about.

Isolation, Loneliness and Depression are the things that kill people before their actual life situation that happened.

Be vigilant. There are alot of volunteer agencies "senior helpers is in our area. Find a way for him to have other men come over possibly with like situations.

I know I am not in your situation now, but I have cared for many private in home clients, and it is all about making the best out of every day.
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I'm not trying to be mean, but unless you have a lot of family who can help you, you are going to have to deal with heavy lifting and changing his diapers, that is, total care. Once they dump him home you are on your own. Home PT/OT is only once a week for an hour, and that is very limited and it has nothing to do with basic care. i'm telling you the way it is.

So sad the hospital did not work with you. He is only going to get worse. How are you going to cope without his income? Unless you are retired or on disability you will have to get a job to support yourself. I cared for my mom for 15 years and in the end she was total care kept alive with tube feedings. She died 1-1/2 months ago at age 90, and I had to get a job to support myself or end up homeless. Let me assure you those bills keep on coming in without mercy. Caring for her was extremely difficult and stressful. Losing her catastrophic. but unless I want to live out on the streets, I had to pull myself together and get a job. I don't know how I did it but I did.

Nobody on this earth would have cared for her better than I did, and I had NO HELP. So I cannot ever reproach myself, and find comfort knowing I gave her excellent care and a quality life. She never suffered even in the end, and she died in her own home. Her skin was in perfect condition, nutrition met, and her lungs were always clear and not a single urinary tract infection because I devoted my entire existence on her. I literally sacrificed my life for my mom. Ironically Alzheimer's disease did not kill her -- she developed liver cancer and liver failure. Symptoms appeared very quickly and she died one week later. There was nothing else I could do for her and it was God who killed my mom. Mom would still be alive and thriving if she did not have that cancer. Her mind totally wiped out from Alzheimer's but her body kept alive due to my diligent around-the-clock care. The hospice nurse was going to start her on that "comfort pack" but since mom was so incredibly peaceful she never had to use any narcotics.

The only time mom moaned or showed any signs of discomfort was when I had to turn and clean her up. She hated that but I had to do it--I mean a person just cannot have a diaper full of urine and poo, but when I changed her diapers and bathed her she would rest comfortably. So at least I knew she was still capable of responding to discomfort. Mom never suffered, even in the end.

Now can you do that? Most people can't. If you can't get him in a nursing home.
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Utopia1942 Dec 2019
I admire and respect what you have done for mom. God bless and I hope the lord lightens your load.
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Continued PT and OT is the answer. Toileting and showering may be a big challenge that you or someone may have to assist with. A lot depends on his attitude and outlook. Try to keep him cheerful. Lots of encouragement. Have you considered a therapy animal? A little pooch for my am worked wonders.
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cetude Dec 2019
I do not believe a therapy would help because he could trip over the dog or cat and hurt himself or the animal. People with pets need to consider this and they are very expensive to keep.
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A stroke changes a person’s life immensely and it will also change your life. Nobody is the same. Everyday will be a challenge and learning experience. I highly recommend you look into getting a Get-U-Up Lift with a sling back by Invacare. It will help him transfer and help you lift him safely. Medicare will cover it.
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From already having been his caregiver you know how challenging it can be. It's going to be hard trying to care for him now that he has had a major stroke. A lot of us do approach these situations thinking we can manage. But there are a lot of unknowns and anything can happen.

With a major stroke (added with his history of other issues) he may need around the clock care. Just like Countrymouse stated you need to find out just how much assistance he will need. Have a meeting with the PT and OT at his bedside to discuss and see in person how much help he needs with transfers, toileting, dressing, eating etc. They can show you the correct way to do each of these tasks. You didn't mention him seeing a speech therapist so I assume he is ok with regular foods. But you did state he has alzheimer's/dementia so I would be concerned about increased mental issues.
After my father's stroke in the spring he went from the hospital (2 weeks) to an inpatient rehab facility (2 weeks) then to a nursing home for short term care which has now become long term care since he has not made enough progress to come home. He is still very weak on his right side and he also has some memory issues and occasional emotional moments. Of course I know everyone's experience is different. And I have learned to ask the medical personnel working with my father any and all questions no matter how trivial pertaining to his care.

Don't forget to take in consideration your well being during this time too. I hope the best for you.
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Is he able to communicate? Incontinence issues? Swallowing may be a huge issue too. Baby food consistancy very small spoonfuls. What are his limitations? Invest in a decent body pillow (1 to use 1 to wash) this way he will be able to be moved on his bed to avoid pressure sores. If he's coming home using adult diapers, aquaphor baby as a proactive skin barrier would be a good suggestion along with a big stock of unscented wipes for cleaning up. I hope you have help because it will not be easy. Is he a veteran? He may be eligible for benefits thru the va which may pay for in home care. Is he medicaid eligible? It may not be much but every little bit helps. His situation will be very time and caring intensive. Ask how they are getting him into the wheelchair and out of bed, it maybe more labor intensive than you realize or can handle by yourself. Keep us posted on how its going.
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From your profile:" I am caring for my father Dad, who is 76 years old, living at home with age-related decline, alzheimer's / dementia, depression, hearing loss, incontinence, and mobility problems." and
"I've been looking after my dad for 2 years now, in his home, and find him to be quite challenging. I need help navigating this caregiving role."

Do you live with your father? How old are you? Do you work? Do you have a family? Are you the only sibling who takes care of your father? Does he pay you?

However challenging your father was before the major stroke, he's going to be much more challenging now. Are you the only caregiver? How do you expect to continue without help?
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cetude Dec 2019
exactly. if not already retired or on disability, the writer will have to get a job and support himself. After my mom died that's exactly what I had to do and it was not easy. She died 1-1/2 months ago but those bills just keep on rolling in. I was so stressed out over my own living condition--trying to survive and not end up homeless I had very little time to mourn.
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Practical matters first: before your father gets home, you need to nail down the PT and OT about what your father is able to do, right now. How marked is the right-sided weakness? Can he stand? Can he reposition himself in bed?

As long as he can bear weight, even if only briefly, he will be able to transfer with assistance from bed to wheelchair to riser-recliner or commode or adapted toilet even; and while he's in rehabilitation is a good time to get the professionals to show you how.

If he cannot stand at all, you will need some pretty hefty machinery - either a stand-aid or a hoist.

If he can't reposition himself, you will need to watch out for pressure sores. A variable pressure air mattress for his bed, and pressure-relieving cushions for his chair/sofa would be standard equipment.

What other effects did the stroke have? Any speech, swallowing or other impairments?

Continence care may be an issue: has this been discussed?

Then looking at more of the overall picture - how would you yourself say he's doing?
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Are you hoping being home will lift his depression so he can make better progress with PT/OT? Depression due to chemical changes in the brain is a result of stroke damage. Even with anti-depressants, it takes months for the brain to heal enough from a significant stroke to really lift the depression. Depression means your father will be less likely to initiate even normal actions: eating, brushing his teeth, turning on the TV, simple exercises to restore circulation and movement to his right side limbs or even assist with transfers.

You need some kind of monitor system to help you keep an eye/ear on Dad. I use a vtech baby monitor with an intercom function to listen to my mom's bedroom and reply back quickly. Sometimes Mom wants to tell me about something she can see out her window or just needs to know I'm here in the house so the intercom lets me respond quicker.

The paralyzed limbs will tend to be cold and the muscles will contract without massage and range of motion exercises. The longer your father delays PT, the less likely he is to ever regain use of his limbs. Even a partial recovery can have major benefits in improving your father's quality of life. If they remain completely paralyzed, there are long term health impacts beyond mobility like higher blood clot risks and pain when nerves in the shoulder are pinched as the arm moves out of the shoulder socket due to muscle atrophy. The first year is golden, with 90% of all physical recovery being achieved within that year.

I suggest you consider getting your father a lift chair to aid in home PT. You can start with the lift chair nearly raised to full and a walker placed in front of your father. He needs to stand and use the walker for balance. From the elevated position your father should be able to stand using one leg since one leg supports our weight all the time when we are walking. Just balancing in a standing position works core and leg muscles as well as the arms as he uses the walker. Standing at the walker, your father can shift his weight side to side, lift his feet (march in place), take a small step forward then backward, slide the paralyzed hand forward and backward along the walker frame, etc. As your father improves, reduce the lift height until he can stand from a full seated position. There are several exercises he can do when seated too; you may need to help with some bungee like straps for him to lift the paralyzed arm and leg at the start. The PT tech should be able to show you how to use a gait belt to help your father's balance and to pull him back toward the chair if he begins to fall. In the beginning you may need to do a few exercises several times a day. A soft ball your father can squeeze in his hand is helpful as well as getting him to lift his heel or toes while seated. Even small movements work at rebuilding the neural pathways and improving circulation.

If your father cannot assist in transfers, you will need a lift assist device to safely transfer him to/from the wheelchair. A wheelchair blanket, with ties to secure the blanket to the wheelchair frame, can be very helpful keeping a lap blanket out of the wheel.

Assuming your father has some paralysis to the right side of the mouth too, you may want to purchase several hand towels to use during meals as food and drink will tend to escape out that side of his mouth in the beginning. Foods that require a lot of chewing can also create some challenges. Sectioned plates might work better along with a larger handled spoon. I would encourage you to develop some hand food meals so meal time is not always a challenge. We quartered sandwiches so they were easier to pick up, served a lot of tater tots, used the microwave to soften carrot sticks, cut cucumbers and tomatoes into bite sized bits, etc. We also got an insulated mug so coffee doesn't cool so much during the longer to consume meals.
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My father had a bad stroke and was In rehab for 2 months... At the time he couldn’t walk or do anything for himself.. I don’t know what all damage has been done to your parent but the stroke done my father in(mentally and physically). I thought all He would need was My love to take care of him but I was so wrong. I was mentally and physically drained. I dreaded waking up the next day because my day consist of it being all about him and he was very ungrateful. I spent more time catering to him then I could my own children because I thought he just needed more help. I realized I was being selfish to my children and I had to place him In nursing care.. No regrets for me.. I got a peace of mind and I’m better able to help him then I was him living with me. I was no good to him as he caretaker because I was drained. He’s in a nice LT nursing care. I can still be a good mother to my children whom really need me the most. If you’re able to get a lot of help in the home then in home care might be great for you! But if you don’t have much help I would advised you to think long and hard about taking on that responsibility. Good luck!
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Firstly, can he stand up? If so, can he transfer (pivot turn from chair to commode etc). Or does he need a machine?
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My s-mil tried to take care of Dad after his major stroke. It was far too much for one person- or even 3. It permanently damaged her. A nursing home has shifts of multiple people who can spread out the work and you don't have to worry "what if I'm sick, I can't let Mary down." You can go back to being loved ones instead of workers. If there's any way to keep him at a care home or with round the clock agency carers, that's what I'd do now.
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Has anyone suggested that perhaps he needs to stay in the rehab center as a long term care patient?

Has Medicaid been suggested as a payment source for his stay there?
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