Caretaker to Grandma post-stroke - Need Advice

Go Team Grandma! :)

First of all - huge sympathy to all of you, to your grandmother, your mother and you. I'm sure it doesn't feel like it at the moment, but I am glad for you that your grandmother was taken out of the danger zone and sent home. If you feel as though her progress has ground to a halt, I can promise you that the isolation and unintentional neglect she might have undergone if she hadn't been discharged - not to mention the higher risk of infection - would have been much worse.

So: here you all are, four months post-stroke, and feel like you're wading through treacle. Two busy people attempting to do the work of an entire rehab team comprising health care assistants, qualified nurses, physical and occupational therapists, speech and language therapists, dietitians, psychologists, medics... are you feeling a little overworked???

Take deep breaths, and then think: patience.

It takes months to recover fully from a stroke, and the older a person is the longer it takes. Where you are at the moment can easily feel like the doldrums: grandmother made rapid progress at first, now seems to be going backwards and isn't co-operating so well, and you're discouraged and overwhelmed.

This year is just the most awful time for families in your situation. The main medical services are under so much pressure they're not accessible for the kind of sustained treatment your grandmother should ideally be receiving; and the allied professions - dentists, chiropodists, PTs and OTs - all seem to have gone into hiding. I saw three clients yesterday who desperately need a podiatrist not because they fancy a pedicure but because the condition of their toenails is affecting their gait - we're really discovering how essential these services are!

It *is* easing up, you will be able to access therapies and support again soon, but meanwhile all you can do is keep on keeping on.

To keep sensible boundaries in place at home, so that you and your mother don't break under the strain of trying to be your own rehab unit, Do A Schedule. A big, colourful, weekly timetable that can go on the kitchen noticeboard and that fits in with your own commitments and needs.

With diet, exercises, personal care routines, activities of daily living and enrichment activities: offer, encourage, facilitate, assist, but #1 NEVER force and #2 don't allow yourself to become despondent or discouraged if/when grandma says no. It's okay for her not to be okay. She is in recovery, it will take time, and the key is to keep up constant, gentle, forward pressure to support her.

You do want to watch her mood: acute clinical depression is a risk post-stroke and is ugly. It isn't the same as the fatigue and apathy that result from the brain ring-fencing all her energy to heal itself: if you notice changes in her such as "flat affect" - a total absence of positive or negative emotional responses to anything - or deep misery with no clear cause to it, then flag it up and make her doctors pay attention.

But just wanting to stay in her chair... insist (nicely) that she occasionally move and stay in her bed, her chair, a different chair, the sofa, wherever... because she needs to mobilise and she doesn't want pressure sores; but the reason for this is that she's more tired than you can easily believe. Resting is part of the recovery, it will very gradually improve.

What are your mother's thoughts? How is she coping?

You're very blessed to have a grandmother that you're close with. That being said you are very young and still have a lot of your life left. Being a caregiver is hard at any age, but I would imagine even harder at a younger age. You mentioned that you are not trained to be a caregiver. None of us are. We learn as we go and ask and learn from those who have gone before us. I know that you are doing the very best that you can. That's all any of us can do. Your grandmother is very fortunate to have you.
Hopefully when life gets back to some sort of normalcy, you can have a physical therapist come to your home and work with her, and perhaps even an aide to come help as well. You need to be concentrating on your studies and your life. I'm sure as sweet as your grandma sounds she would not want you to be putting your life on hold for her. She's lived her life. Now it's time for you to live yours. Best wishes in all you do. Hang in there. you are not alone.

You’re a kind and compassionate granddaughter for caring so much for your grandma. Be sure to devote care to yourself as well. Your grandma cares for you I’m sure and wouldn’t want your life and studies neglected.
My mother had several strokes. What I know now that I didn’t realize then was that the apathy she developed, the not wanting to cooperate with exercises, not enjoying activities as before, was caused by depression brought on with the stroke. It’s very common. She was greatly insulted by the word depression and we walked on eggshells around it and didn’t seek proper treatment. We should have insisted that she be given a medicine for it. Talk to grandma’s doctor about this, along with what you’ve told us you’re seeing. Take good care of yourself

You have great advice here! It sounds like your grandmother was in a rehabilitation hospital. If she wasn't, if this was 2 months in acute care, then she had a very serious stroke and may benefit from in-patient rehabilitation now. Medicare has changed the rules and it is possible to have her admitted from home. Another possibility is to arrange for in-home health services for OT and PT. Again, the rules are more flexible due to the desire to keep frail patients away from sick patients. She should be able to get in-home rehabilitation because most out-patient facilities were closed for the last few months and are limiting patient appointments as they open to keep patients and staff from being close together. The last point is, someone was to have been trained as a caregiver before grandmother was discharged. If it wasn't you, was it your mother? If no one was, you will all benefit from this type of training. Contact your local department of social services, a local rehabilitation hospital, or the hospital where Grandmother was previously an in-patient to ask for help.

You only get one time to be 24-years-old. Make sure you budget your time so that, when you turn 60, you have some fun, exciting memories of your youth. That means budgeting your time so that you have time for fun...away from your studies and away from your caregiving. You will not believe how quickly youth turns into middle age. Please spend this precious time wisely.

When you are able to get a doctor to send someone to evaluate Her----For a Nursing Home Care, I tmay be best. Talk to the Doctor when it is available to do so and begin the process for Best from the Rest Care----Giving.

I am sorry this happened to your Grandma.

I could bore you endlessly on this topic (I have a fair bit of stroke in my family) but I'll try to contain myself to 5 things to start.

1. Have you got a local Stroke Foundation to call? The US, UK & Australian sites all have great resources online if that suits you. Info on moods especially (apathy, emotional lability).

2. Learn the term *Stroke Survivor*. Not stroke victim. Maybe it will help you or Grandma to refocus from 'this bad thing happened to me' to 'I survived'. Yes it is bad. It's a brain injury (another term to learn). But it happened, so now we work towards what recovery is posible.

3. Stroke can vary so much, each person will have different effects & recovery.
So DON't compare to others.

4. More help. You can't do it all. Hopefully a social worker is still attached to Grandma's case, or Office of Aging? Assessment for what care is required regarding ADLs & how to get it. I'm talking paid non-family aides coming to provide this hands-on care in-home. If you work/study & Mom works then you will most probably need this help.

5. Responsibility. To be continued if required... but in a nutshell, it's not up to you to provide ALL her care.

Just love her. Get the professionals in & get a real picture of her needs to start.

If no assistance at this time but family, please call her doctor & get a Home Health evaluation. When skilled care such as PT, OT are involved, an aide might be able to give some care to her. An RN will do the initial eval, inform her of the aspects of your grandma that concern you. she may recommend to the doctor an antidepressant that will be safe for her to take. She may also be able to explain to her the "normal" feelings that she is experiencing post stroke. Be prepared to ask pertinent questions when help comes. Are there other family members that would be willing to help out so that you can get some respite time to focus on yourself? Just remember to keep gloves, sanitizer, & masks available to all who enter. Professionals should be masked when they visit. Great advice given by several others before me. Reach out to any resource available. Check with her insurance company to see what would be covered in caring for her & other resources. Think of hiring an aide if no help is extended to provide you with the time you need to continue with your studies. Find time for yourself to prevent caregiver burnout. God Bless & Stay Strong!

First, consider getting her doctor to prescribe an anti-depressant. It is extremely common for stroke patients to become depressed by their sudden lack of mobility and having their choices limited. If her mood lifts, she'll be far more inclined to do her exercises and live life.

Then research various exercises that she can do either with you or by herself. Buy those elastic resistance bands, for instance to use for both leg and arm exercises. Consider hiring a physical therapist to come in once or twice a week to help her.

Take some tips from Beatty, and call on any local groups that can help stroke survivors. You and your grandmother both need some help with this challenge, and there's no need to face it alone.

I would talk to the medical professionals and explain you can't do the impossible and she needs help - now. Seems it is time to place her into a home where help is available 24.7. Good luck.

Ask for therapy at home. Some folks seem to do more for strangers than for family members. Doctor can order it for you and emphasize to him her stay at rehab cut short so she needs daily or min of 3 times a week to make up for what she has been missing. Let him know you were seeing improvement while at the rehab, so you feel she would benefit from getting this therapy. He can order nurse to visit her. The home health people will also ask about other help they can provide, like bathing. Let them do anything they are willing to do. No matter how minor it may seem, it will be a task taken off the family,

It would be depressing to go from mobility to having parts of the body no longer functioning like they used to overnight. Accepting walkers and wheelchairs is difficult. Try having a real sweet/low key talk with her about getting outside to enjoy her yard like she used to. Kind of give her the choices - stay indoors and locked away or get out and see some different scenery. Either way the same number of days still pass, so do as much as you can. Don't cut yourself off. Maybe she will understand it would make you happier to see her getting out. - Not a conversation for several people to have with her at the same time because it can be overwhelming when several are telling you what to do. Hugs to you for wanting more for her than she wants for herself right now.

My name is Dr Grenan ,I have a PhD in Hypnotherapy, Ms psychology and MA in Education, I am a survivor of 4th stage colon cancer and 4 months in a coma with 106 degree fever, sepsis, peritonitis,double pneumonia, heart & kidney failure....

In this case I suggest you get your grandma to her PC and have all her team of doctors check her out full physical, bloodwork, Brain scans.....everything THEN see what is BEST for her. In the meantime just LOVE HER SEE HER, HUG HER TELL HER YOU LOVE HER HAVE ALL HER GRANDCHILDREN DRAW FLOWERS PRAY and of course check her for the virus...God Bless

I am so sorry for what you are going through, being a caregiver is not easy no matter what our ages are. If you Grandmother isn't eating, ask her Dr. if he would consider putting her on Remeron, it's suppose to stimulate their appetite. If it doesn't seem to work, then feed her things she will eat that has high calories, like pudding, ice cream or smoothies. I had to do that with my husband and it worked. As far as exercises, she might be able to do them while sitting in a chair using stretch bands, weights or just stretching and just moving (any movement is better than none). Put some music on and get her to do some arm and leg movements. Also, if possible, get her outside or by a window to get some sunshine. I pray your Grandmother will start to improve and lessen your worries.

Being a caregiver is certainly no easy feat. Just know that you are doing a great job and when it becomes a little too much, take respite. Big hugs and many prayers.

Regarding meals:

Has Grandma been seen by a Speech Therapist? Confirmed OK for normal texture diet?

Stoke can affect the swallowing muscles. If she splutters, drools or drops food she may be too embarrassed to eat or drink in front of others.

Was she right handed? Learning to eat with non-dominant hand is hard! Spills will happen.

If meals need to be modified (or softened, mashed, cut) try to do before it is served to her. Provide a normal adult napkin (no bibs). Some cup shapes may be easier than others for her left hand to manage. Bowl instead of plate to stop food running away.

An OT will have lots of info to help Grandma improve her independance with meals.

please ask her primary care physician to order Home Health for your grandmother. Nurses, Physical Therapists, Occupational Therapists, etc. will come in on a regular basis to check on her and report back to you and the doctor. The ones my mother’s doctor has referred did a great job and helped Mom get back to her new normal.
Blessings!

It is not unusual for a person to suffer from post stroke depression due to the change in the brain from the stroke. I would suggest the you contact your grandmom's primary care physician and explain the situation. She may be in need of an antidepressant. I also would contact her insurer to see if she is eligible for any further rehab services. After all, if the pandemic hadn't hit, she probably would have gone to a facility for short term rehab. You are a wonderful granddaughter for being so involved and supportive. Remember though that it is perfectly okay to take a break to attend to your needs when you're feeling overwhelmed. Taking breaks will make you a better caregiver. Take care..

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