Recovery advice

Good afternoon,

It has been around 2 years since my dad suffered his BA. He still is very cognitively impaired, lacks short term memory, we cannot leave him alone as he does not remember how to cook or the steps to getting read for the day. We placed him back in speech therapy recently, hoping this may help us. Have any of you seen improvement after 2 years? or is this it for us? Is there any advice you have for recovery? Also have any of you hired outside help to assist with caregiving fatigue? We were looking into maybe hiring a caregiver to assist a few hours a day.

Thank you
Bree

Hey Bree,
Prior to my own neuro incident I worked in the disability sector. My ‘official’ role was as a teacher, teaching people independent living skills, basically, how to cook clean and look after themselves in their own homes. BUT, a large part of my role was as respite for families. To give families that ‘Bit of a break’. We would teach people in their own homes, using their appliances and their equipment. There are some places that run classes, but often in a classroom setting you have all of the right equipment etc. But then to transfer those skills to a different environment, their home, with different equipment can often cause issues

For memory issues, something we used to assist clients was checklist charts ie Steps to get ready for the day. For some people their reading skills maybe impaired, so we made picture checklists for the clients recognition of tasks. It was repetition of tasks that assisted in the relearning and that repetition can be frustrating for all involved, so we’d break the tasks up into steps. Then work through the steps with the client. Examine which steps are causing difficulty and why. Then concentrate on those steps. Is it a memory issue? Is it a physical ability issue? Is it a confidence issue? Is it a frustration issue? There are a few things that you could put in place that may assist everybody concerned.

Have I seen improvements after 2 years? Definitely, both in clients and in myself. Now, I’m 9yrs since my last neurosurgical episode and I find, even today, I have good days and bad days. On the good days I can have such clarity of thought, but on the bad days… …just YUCK. It’s never just one thing that’s a trigger, but rather a combination of things that impact and they all add up to YUCK. If it was just one trigger, it’d be easier. I’d simply avoid that trigger, but it just ain’t that simple.

Caregiver fatigue is VERY common and there are services out there to help. Now, I’m in Australia and working in the field, I know what services are available and how to access them here. But I am unsure of the services in the U.S. or how to access them. In saying that, I would suggest that a social worker connected to the treating hospital should be able to assist or at the very least be able to direct you to such services.
Here are some other links that may (or may not) be of assistance.
[Stroke Rehabilitation & Stroke Recovery (clevelandclinic.org)]
(Stroke Rehabilitation & Stroke Recovery)

Cleveland Stroke Club | Providing information and support for stroke survivors and their families.

Stroke Diagnosis and Treatment | Stroke Center Of Excellence At University Hospitals | University Hospitals (uhhospitals.org)

If you contact these links and they say ‘No, we are the wrong agency’ then ask them ‘Who is the right agency?’ Many of these health services network with each other and once you make contact they can assist in accessing other services within their network. There are many services out there, it’s just linking in with them.

Hope it helps
Merl from the Modsupport Team

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There is definitely ongoing improvement as Merl has said. I remember my Neurosurgeon saying once that this was as good as it’s going to be and I told her she was wrong that my brain could still do more. But there’s a Psychiatrist, Dr. Bruce Perry, down in Houston Texas that’s been doing a long term study on children with brain trauma. Dr. Perry’s research has shown that no matter our age, our brain can recover. The older we get, the longer it can take.It’s been an enormous amount of work for me. When I was a Psych student back decades ago, the belief was any damage after age 5 was permanent, Dr. Perry’s research proves otherwise and gives us all hope.

In our county in NC, we have an adult day care services. A friend has become the director and tried to encourage me to come and stay but pride may have been part of the reason I said no thank you. Your county may have something similar, look for Adult Services. It can be free or low cost depending on his income.

I had to use a lot of sticky notes for the first few years and a white board. I was taught in Speech Therapy to look at my smart phone first thing each day so I would know the day and the date as well as any appointments. I set two alerts for each of my appointments so I can be ready and leave on time. Like your father, I had issues with cooking. I am not allowed to cook unsupervised, per doctor’s orders because of one of my Speech Therapists😂 I used to love to cook but there’s too much going on. When Dad was still alive he chose not to come into the kitchen to supervise me, yet wanted to have several discussions. I burned the hot dogs and the kitchen smelled like it. No more hot lunch for Dad! We found a work around that I can still help in the kitchen by prepping everything for BH. In the beginning it could take all day for me to chop, slice, shred, grate, etc. I’m down to a few hours and still might not see the directions for an ingredient or two. I can grill and smoke without supervision on good days.

Besides Adult Services, he may qualify for services with the Council of Aging or Senior Services dependent upon his age. If you want, you can call Adult Protective Services in your county and ask for a list of agencies that can help your Dad. Either the secretary will know or she will pass you on to an APS Social Worker who should know. If you can’t find the numbers, let me know what county he resides in and I can do a quick internet search for you.

Like Merl, I also learned many things in my past employment. They’ve helped in my recovery quite a bit. One of the most important is for caretakers to take a break as you know. The other is for caretakers not to do what we can do. Yes, it may be easier and faster to do it for someone, but it won’t help that person improve and they may just get mad as a hornet. Speech therapy was wonderful to stop that behavior with BH and gave us work arounds that required notes usually on my smart phone especially for self care.

He may also benefit from Occupational Therapy. This was not available for me in our county due to its size and location. Another place to seek help is any stroke support group in your area usually found with your local hospital. Let us know what you find, it’s how we all learn!

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Thank you for that advice, its very helpful. He lives in lake county in the state of OH. I have been trying to find adult agencies that aren’t necessarily geriatric considering my father is quite young.

Thank you for your response!!

Start with Adult Protective Services Adult Protective Services - Job and Family Services. They may know of some type of service he can receive. If not, try these folks that work with developmentally disabled even though he doesn’t fit the criteria Adult Services - Lake County Board of DD / Deepwood as they may know of places.

I’m pretty ignorant of Ohio, though in 1976 Mom had two flat tires coming from PA there. I drove the rest of the way home to California :joy:. And I went into Cincinnati for a seminar while staying with my Aunt and Uncle in Ft Thomas KY. But see if these folks know or can help. Neurological Outpatient Rehabilitation Locations | OhioHealth

Oh please dont let pride get in the way of potentially helping someone… even if its just ONE someone!

This forum has encouraged, strengthened, confused, scared, lifted. educated me…

and i’m so very thankful for all of you. i don’t compare, i try to gain knowledge, and wisdom… that is the greatest asset for someone like me.

Please… you never know who will be put in your path to receive your wisdom. try. :slight_smile:

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I’m really happy to read the members here have had a great, positive impact on you! I think they’re all really special…

It wasn’t pride to help others, it was my pride that got in the way of admitting I may need help from a colleague that I used to work with. He was in APS and I was in CPS. CPS took all the APS calls after hours.

To help others, it’s one person, one day at a time. I agree wholeheartedly that we all should make the effort to try! Anytime we can help another on their life’s journey be it a kind word, an act of kindness, sharing our experience, educating someone is always a good day!