Caregiver - Stroke Need Assistant ASAP

Posted by Concerned Stroke Caregiver @jbarnum01, Jun 15 5:07pm

Hello All,

My dad suffered a stroke 4 years ago. He received the clot buster during his stroke which ultimately saved his life. Looking at him, and talking to him sometimes you would never know he had a stroke. He has progressively gotten worse with the symptoms below over the last 4 years. Family and friends don’t want to be around him, we can’t bring the grandkids around, cant bring him into public due to what he may say or do, and everyone walks on egg shells when we are around him. I am not sure how much more my mom can handle as she is the primary caregiver for him, and she has to deal with a lot of items that I am listing below.

Lashing out
Anxiety
Depression
Anger Issues
Cant have a conversation without him complaining
Obsessive Compulsive Disorder
No Filter – Everything he thinks comes out of his mouth without any thought
Weight up and down
Lack of intimacy

He has doesn’t like his neurologist, and I am not sure why. My mom doesn’t want to have him on any meds or commit him in anyway. She just told me that she is not sure how much more she can take.

My dad also struggles with B12 deficiency and also notherapy (sp) on top of everything. He doesn’t take his B12 shots like he should and also doesn’t see the doctor about it. Not sure if he is taking his meds to make sure he doesn’t have a stroke again. I feel like he is a ticking time bomb at multiple levels. The doctor said that he had multiple mini strokes before he had the major one that required the clot buster drug. He has tried an antidepressant that was a vitamin I believe, but not sure what is was. It defiantly did nothing.

I could go on and on and give 4 years of examples on everything I have listed below, but this would be over 20 pages long. I am asking for help ASAP because the issues are getting close to everyday and I know my mom doesn’t deserve this neither does he. Please help ASAP I am stuck on what to do next and who to take him to. This may be a scenario that is an ultimatum from my mom to my day to get some help. Not sure that is the best way to help the two of them.

Please feel free to give any feedback possible. Thank you for letting me ask for help

sorry to here. I am 58 and had a stroke at work when I was 53. I am back at work full time. I get tried very easy and I have being having a more difficult time stay calm when I can't do things easy anymore.Don't know what caused it. I take one baby chewable aspirin daily. It is not much but it can help thin blood some and it would be ok for all. I am not a doctor so check with yours(everyone's). Make a chart for drugs and time to help remember and be able to look at time. I try to go to support groups some have fun activities you may or they may not of thought about doing. Things are not the same as before the stroke and you can't tell I had one unless I tell you. Also who has power to help mom and dad and then make sure that person has backup because you never know what can happen. I can go on and on. Hugs everything changes sec-mintues-daily.

REPLY

@jbarnum01 Im sorry to hear about your Dad,s condition. This is tough for sure . When you Dad goes to the Dr. I would suggest your Mom go with him if he doesn't ask questions she should . Write down everything you said here about his condition now and see what the Dr suggest to you . Sometimes a loved one gets burnt out and needs some help . Does your Dad require 24/7 care then you should consider what is best for him and ultimately for you also . I,ve been through this situation only with Alzheimers and my Mom I,m not saying this to you to be mean but with reality . Good luck I,ll be praying for you .

REPLY

Hi @jbarnum01 I am Scott and while I am sorry to read of your dad's health issues, I am glad you found Connect and this caregivers group! I was my wife’s caregiver during her 14+ year war with brain cancer and have had a stoke myself. Sound like your dad, mom, and you have your hands full and more!

One of the many challenges of caregiving is that each patient, their illness, and their path is unique. That said I'm hopeful some of the lessons I learned as a caregiver might be of help.

While I'm not any kind of medical professional, many of the symptoms you describe are similar to the stroke-like effects my wife had and I struggled with. The first thing I had to do was grow thick skin and not care what other folks were saying about my wife, etc. when we went out. It is often hard to remember it is the disease taking and not the pre-disease person. Our grandchildren came to understand grandma was sick and it helped them develop more empathy over time. It is very easy to get totally isolated with being a patient/caregiver with chronic illness. Yes, lots of people commented on my wife’s actions, abilities, inabilities, and her language. However, taking her to get out of the house was far more beneficial to her and me and I learned to either hold my tongue or at times simply look at someone who had been rude and say “yes, brain cancer is a terrible disease!’ Then with a gritted-teeth smile I’d walk away.

As a stroke survivor myself I say your mom might need to have some medical professional explain the importance of her husband taking his meds as crucial and not something in her control, beyond helping him take them on schedule. She may wish him to not be on anything, but in my case they are keeping me alive! For months my wife had to take several of her meds every two hours around the clock. I take several a day and I welcome that I can and that hopefully they are helping me.

Over the years my wife disliked several of her doctors. No outward reason, but there was some vibe that she felt and it didn’t go away. Some we had to suffer since there was no alternate in our town (her GP), but when we found a good one (like her neuro-oncologist at Mayo) we did everything we could to stay with them. Many we gave up on and found a replacement!

Another thought is perhaps having a social worker talk to your mom and dad might be very helpful to get some help and a better understanding of the ongoing changes in your dad. My stoke effects have not gone away, won't ever, and it was a struggle for me to accept them and my new limitations. The same was true for my wife, but our lives got far better when we accepted what had happened and began to try and make the best of our different lives as best we could.

I also hope they have had time to get their crucial paperwork done for advance medical directives, POAs, estate, and final wishes written out.

If I may ask, how old is your dad?

Strength, courage, and peace!

REPLY

I can only repeat what I sent in a message several years ago. Have in writing all the concerns you listed and any others you may have questions about. Hand it to the nurse or doctor on arrival and it eliminates having to state these concerns in front of your father. He will deny them or think you are 'ganging up' on him. I know that was the case with my husband who had Alzheimers. Just out of the blue he would decide someone was spying on him or taking behind his back. Neighbors that he had been very friendly with suddenly became the "enemy". He passed Feb 8 after about 6 years of Alzheimers, the last three in a care center, since I couldn't take care of him 24/7 anymore.

REPLY
@IndianaScott

Hi @jbarnum01 I am Scott and while I am sorry to read of your dad's health issues, I am glad you found Connect and this caregivers group! I was my wife’s caregiver during her 14+ year war with brain cancer and have had a stoke myself. Sound like your dad, mom, and you have your hands full and more!

One of the many challenges of caregiving is that each patient, their illness, and their path is unique. That said I'm hopeful some of the lessons I learned as a caregiver might be of help.

While I'm not any kind of medical professional, many of the symptoms you describe are similar to the stroke-like effects my wife had and I struggled with. The first thing I had to do was grow thick skin and not care what other folks were saying about my wife, etc. when we went out. It is often hard to remember it is the disease taking and not the pre-disease person. Our grandchildren came to understand grandma was sick and it helped them develop more empathy over time. It is very easy to get totally isolated with being a patient/caregiver with chronic illness. Yes, lots of people commented on my wife’s actions, abilities, inabilities, and her language. However, taking her to get out of the house was far more beneficial to her and me and I learned to either hold my tongue or at times simply look at someone who had been rude and say “yes, brain cancer is a terrible disease!’ Then with a gritted-teeth smile I’d walk away.

As a stroke survivor myself I say your mom might need to have some medical professional explain the importance of her husband taking his meds as crucial and not something in her control, beyond helping him take them on schedule. She may wish him to not be on anything, but in my case they are keeping me alive! For months my wife had to take several of her meds every two hours around the clock. I take several a day and I welcome that I can and that hopefully they are helping me.

Over the years my wife disliked several of her doctors. No outward reason, but there was some vibe that she felt and it didn’t go away. Some we had to suffer since there was no alternate in our town (her GP), but when we found a good one (like her neuro-oncologist at Mayo) we did everything we could to stay with them. Many we gave up on and found a replacement!

Another thought is perhaps having a social worker talk to your mom and dad might be very helpful to get some help and a better understanding of the ongoing changes in your dad. My stoke effects have not gone away, won't ever, and it was a struggle for me to accept them and my new limitations. The same was true for my wife, but our lives got far better when we accepted what had happened and began to try and make the best of our different lives as best we could.

I also hope they have had time to get their crucial paperwork done for advance medical directives, POAs, estate, and final wishes written out.

If I may ask, how old is your dad?

Strength, courage, and peace!

Jump to this post

It is sad to read about about having to deal with a cancer diagnosis in Cameroon. I am a native Minnesotan, now living in Pennsylvania, who was treated successfully 7 years ago for Cancer at the Mayo Clinic in Rochester. I was a Foreign Service Officer for 29 years and my family and I lived for three years in Kinshasa, the capital of the Republic of the Congo, just south of Cameroon. While living in the Congo, we experienced some serious medical issues. We sought treatment in the Congo, but were unable to find appropriate resources and finally had to go to another country, The Republic of South Africa, for treatment. Thus I'm familiar with the difficulties of finding appropriate care.

I noticed online that Dr. Paul Ndom of Raounde University in Cameroon gave a talk in Lyon, France, in 2012 on cancer treatment and care options in Cameroon. You can find a link to his talk on the Ecancer website at the following link:
https://ecancer.org/en/video/1588-cancer-care-in-cameroon-and-treatment-options
My suggestion would be to take a look at the article and try to consult with Dr. Ndom, who would seem to be a good source of comprehensive information. We wish you the best of luck, John Keller

REPLY
@djangomay2

It is sad to read about about having to deal with a cancer diagnosis in Cameroon. I am a native Minnesotan, now living in Pennsylvania, who was treated successfully 7 years ago for Cancer at the Mayo Clinic in Rochester. I was a Foreign Service Officer for 29 years and my family and I lived for three years in Kinshasa, the capital of the Republic of the Congo, just south of Cameroon. While living in the Congo, we experienced some serious medical issues. We sought treatment in the Congo, but were unable to find appropriate resources and finally had to go to another country, The Republic of South Africa, for treatment. Thus I'm familiar with the difficulties of finding appropriate care.

I noticed online that Dr. Paul Ndom of Raounde University in Cameroon gave a talk in Lyon, France, in 2012 on cancer treatment and care options in Cameroon. You can find a link to his talk on the Ecancer website at the following link:
https://ecancer.org/en/video/1588-cancer-care-in-cameroon-and-treatment-options
My suggestion would be to take a look at the article and try to consult with Dr. Ndom, who would seem to be a good source of comprehensive information. We wish you the best of luck, John Keller

Jump to this post

@arreyprotus be sure to read this post from @djangomay2 !

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