Dad had a stroke and is coming home from the hospital in a wheelchair. Anyone experienced caregiving for a parent post-stroke? Good or bad.

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?

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!

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.

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

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.

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!

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.

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?

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.

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