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....
Has Medicaid been suggested as a payment source for his stay there?
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.
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?
"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?
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.
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.
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.
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
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.
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!
it. Well done.
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
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
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.