Any caregivers here? Looking for some advice...

[zakirahzakaria]

I haven't been active in the forum lately due to taking care of my mom at home. She had stroke in 2014, and since then, she's had multiple seizures at around 6 months' intervals. With each seizure episode, her health deteriorates and now it's been more than a month since her last seizure, but she's still bedidden. For a stroke patient, that's not good

We have a physiotherapist coming every week to help her gain her strength back, but her progress is very slow. Her right side was affected during stroke, and the seizures that came after it seemed to be affecting her right side again. She has a few bed sores now, which is very worrying.. I give her sponge baths almost daily, and about twice a week, we'd take her to the bathroom for showers. Transporting her to the bathroom isn't easy, and she doesn't like it and prefers bed baths, but she has to move more often..

Has anyone dealt / given care to a stroke patient before? How do you deal with the patients' emotions? My mom cries a lot, especially when she's in pain during exercises & physiotherapies... I feel tired of facing those emotions and at times, I want to take some time off, but I'm afraid if that would be considered neglect? I haven't taken any vacations since 2013... I could really use some time off now but I don't know how to voice it out to my family. I know they'll let me do it, but I'm torn between self-care & caregiving..

[carrie1977]

I'm afraid that I don't have much advice, Z. I watched my mom and grandmother care for my grandfather for 5 years once his Alzheimers took over. It was very rough on them both and it took a toll on their health as well. All I can say is, you have to take the time to care for yourself as well. I know you have your own health issues that you have to deal with so please be good to yourself. I'm sure your family would understand if you need a break...even if just for a few hours a day. Are they close by to help? Can you all set a schedule to where you aren't the only one giving her the care? Are there home health nurses that are available to come in and help? I don't want to see you break down. It won't help you or your mom if that happens. With my grandpa, the veteran's hospital finally sent a home health nurse a couple of days a week to do the bathing and what not just to give a break to my grandmother.

Sending you lots of love.

[littlekiwi]

I agree, ask for help before you suffer from burnout. You aren't going to be able to support her well enough if you are burned out.

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[joelsgirl]

That's really hard. I think you'll be a better care giver if you do a little self care. I know that when I'm taking care of my kids (who don't have special needs but still require a lot of me) a little time away really helps me to be more patient and caring with them once I'm back. I think it's important to voice to your family that you need a break while still making sure they know that you are honored to take care of your mother.

[angiepangie]

It's not quite the same but I completely empathize with what you're going through as a caregiver. My Mum died from cancer and she started to have daily seizures in the last few months of her life, once the tumours had spread to her brain. I was Mum's caregiver and she died at home, under my care, when I was 22 weeks pregnant with my son. My husband and I moved in with my Mum around the time we got married, so we could care for her. It's one thing losing someone you love so dearly, but losing them slowly over a prolonged period of time breaks your heart in to a million pieces.

My husband worked full-time in a phsyically demanding job and when he got home each day he took over my Mum's care for a couple of hours, so I could catch a break. I'd spend most of it crying in the bathtub though. The rest of the time was entirely dedicated to caring for Mum, no matter the hour of the day. I wouldn't get more than a straight 30 minutes of sleep at a time, even during the night.

I'd have family members offering to help, but it's not that simple when they don't know medications (including injections), how to handle her and the changed person she was, the locations of her dozens of tumours (which would give her pain), her staph infection, etc. It's just something you don't understand unless you're living with it, hence why I only trusted my husband with it. I know that it's definitely not as simple as avoiding burning out. I wish it were. I completely understand why you feel guilty about it.

But in saying that, the best thing you can do is let a family member in who is willing to help. I had started to do it with my Mum's sister. Don't just leave for a vacation - start with a few hours. Show them the care that is needed for your Mum and let them learn what it takes. Show them the medications, the little things that your Mum likes, how to understand her changed emotions and start from there. Stay in the house so you don't stress out and if your Mum isn't handling it well, then you're there for her. That way not only can your Mum get used to it, but you can too. I know that we feel it as much as the person we care for, if not more!

Then eventually you'll be able to have a bigger chunk of time off and not have to worry (as much!). And you're entitled to every second of it. Caregivers in the home are absolute living angels and you should never, ever feel guilty for needing a break.

My Mum has been gone for over six years now and I do not, for even one second, regret anything that I did for her. Yes, it is so, so tough at the time to be a caregiver in the home. But I know you will never regret any of it and it will make you a much stronger person because of it. I'm sure that your Mum appreciates every single second of it. She's very lucky to have a daughter like you.

[Lyd]

You've gotten good advice here, Z. I just want to offer hugs. Hang in there!!


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[castangs]

When my mom was diagnosed with cancer, my dad and I did pretty much everything when she wasn't in the hospital or transitional care but the last time they sent her home, we knew we couldn't do it on our own as she couldn't walk or anything. We had to get her a 24 hour caregiver which I understand isn't always an option. She ended up passing away just a week later but having the caregivers eased both her and us tremendously. My mom was quite agitated at the end due to the effects of the tumors in her brain but was often calmed when the caregivers would sing to her. Didn't matter what they sang. One sweet girl could only think of Christmas songs so that's what she sang to her (and it happened to be my mom's favorite holiday) - even though this was happening in July.

Perhaps consider having a professional caregiver for a few hours each day? If it's every day and through an agency, then you will likely only have two different people involved so they can learn routines and your mom well. It will give you much needed respite and your mom will likely grow used to them as well. You can't be an effective caregiver if you aren't taken care of yourself.

Hugs to you!

[bexy]

I wish I knew what to tell you - but know that you're mom and family are in my prayers!

[zakirahzakaria]

Thanks so much ladies for your advice & well wishes... I really appreciate them. I guess I need to open up to my elder siblings on taking some time off.