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Frustrated trying to help Mom
I’m living with my parents temporarily to help care for my 71 year-old mother post-stroke. Her stroke was in November and was in a rehab from December to March. We brought her home just as Covid started to spread. My father (70) works for a grocery store on an overnight shift three nights a week. I have a sister who comes on her days off. I can work remotely for my job for the time being.
My mother has left side hemiparesis and needs assistance with just about everything. She’s got her memory and speaks fine, but her attention span and coordination are rough. This isn’t helped by already poor eyesight that has taken a slight hit on the left. That makes typing on a keyboard, changing the TV channel or using her smartphone difficult, so we help with such things constantly.
Coming home from rehab, mom had a few weeks of occupational and physical therapy visits, but maintaining the exercise routine without professionals has been essentially impossible because of pain. The hemiparesis led to shoulder subluxation. Her right leg was already stiff from hip surgery about two years ago (metal rod implanted), and her left leg has been increasingly sensitive to touch throughout. She did have problems with strong muscle spasms at first, but over the months medication has appeared to help.
Most recently, stabbing pain in mom’s left toes and right heel have worsened. We are putting lidocaine on the pain points liberally, sometimes every 30-40 minutes. The majority of nights, she doesn’t sleep more than 60-90 minutes at a time before waking up and groaning in pain. We have been to a podiatrist a few times and also scheduled imaging on her feet, but the procedure was cancelled when they couldn’t start an IV in her arm. I’m pressuring my father to follow up with the doctor since the pain is so strong and so constant, but it hasn’t happened yet.
Mom is on Medicare and has a Medicaid and Long Term Care plan. At initial evaluation, the plan set up 12 hours of homemaker and personal care services. So we have a person coming every afternoon for a couple hours, but none of the people we’ve had seem like a fit if we wanted to, for example, have someone do exercises with my mom while I’m working. Because of the amount of assistance my mother needs for activities at all hours, the 12 hours feels inadequate. We asked the insurance to request additional hours but we received a denial letter.
My father and I barely have time for anything other than sleep, work, and caretaking. I’m getting near a breaking point myself; I’ve been talking to a therapist but I’ve not been able to self-care like he suggests. It is feeling like my family would have to hire someone out of our own pocket to get more help in the home, but I have concerns about our ability to afford it and how difficult it will be to find someone my mother would be comfortable with.
I appreciate everyone who took the time to read through this, and I welcome your suggestions and thoughts.
AHAASAKatie, August 18, 2020 9:17am EST
I am so sorry that your family is experiencing this. It is a lot to deal with, especially now during COVID-19.
I have a few resources I can share with you.
Stroke Family Warmline - this is our 1-800 number that will allow you to talk with trained specialists.
As you mentioned there are companies that you can hire to stay with you Mom, even for short periods of time so that you & your dad can get a break. We use a service for my mother as she is unable to be alone and in the process of transitioning to Palliative/Hospice care. It is a grey area for families, but remember, you have the right to interview the company & the individual caregivers. You can pick and choose who you want with your mom and are in complete control.
If the home aide company does not agree with those stipulations then find one that does.
You might also be able to find a legitimate, well-vetted & experienced adult caregiver through one of the Care sites. Someone who wants a few extra hours a week that could give you time for you. Even if it is just time to go to the grocery store "masked of course" and enjoy wandering the isles and relaxing without having to worry about what is happening at home.
I know this is a lot to manage and hope that you know we are here to help and support you.
JKViggiano, August 18, 2020 1:41pm EST
Hi DCM. Our experience with stroke has been very different than yours in terms of what is affected. We are thankful that my husband did not experience pain so exercises and recovery were our daily focus. Keeping a daily schedule was essential. We scheduled everything--exercise time, TV time, eating time, outdoor time, etc. Having common goals gave purpose to each day and gave us something to celebrate whenever anything improved.
Katie gave great advice. Be very clear on what you want from an outside caregiver. Of course it takes time to get comfortable with a new person but it could be a great solution even for a few hours a day.
The only thing that came to my mind (you have probably already thought of this) is to give your mom as many voice-controlled activities as possible--Audio books, voice controlled TV remote, Alexa/Siri/Google home pod... See if you can make technology ease your burden.
Good luck. There is nothing easy about this journey. You and your family are doing the best you can.
DCMFLA, August 31, 2020 9:28pm EST
Thank you Katie and JK for your replies.
I keep hoping we can get to a maintenance phase soon rather than scrambling to manage pain and limitations. I am getting much more frustrated lately because everything I read about pain says, "you don't have to live with this, it can be treated" but this has been going on for weeks and weeks. My father calls doctors, but he doesn't have the drive to do it every day until someone calls him back. I hate how angry I get with him, but he is the one who has the availability during business hours weekdays while I work.
i appreciate the suggestion for voice-controlled technology, I think it can eventually work for us, but it will take some training to change my mother's habits and also get her used to possibilities. My mom likes to play some online games, but I wish she would go for more streaming tv/movies, music, podcasts or audiobooks to pass time and entertain herself.