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caregiver for stroke patient
I'm new to this site and am having issues with my wife who had a stroke at the end of jan.2020. she is in her late 60's and a very stubborn person and when frustrated she'll yell and the explitives are clear as a bell. she has most of her mobility, but speech/communicating is extremely difficult. i get just as frustrated and sometimes with my own short fuse will get a little loud too. all the while i try to keep my cool. she was hospitalized for 10 days then rehab for 12 days and they said they couldn't any more for her, not a good arguement to boot her out, in my opinion. So i brought her home and things did improve for awhile, we would take morning walks and have breakfast lunch and dinners at normal times for us. then the weather turned hot and all that stopped, and now she's in sundowners mode. Up all nite slleps during the day. We live in Arizona, so the heat gets really up there during the summer. i've spent the last several months reading/researching what and how to do things that I am now looking to hire a part time caregiver to give me a break and possibly a fresh perspective for my wife. Somebody different might (or i hope) will get some different/better results. I think this might help, I can only hope and pray. thanks for letting me vent a little
AHAASAKatie, July 31, 2020 9:15am EST
Thank you so much for sharing this with us. I have a few great resources for you and I know our members will be able to share their experiences as well.
We offer a Stroke Family Warm Line that will allow you to talk to a Stroke Association team member who can provide support, helpful information, or just a listening ear.
We also have a lot of resources for family caregivers.
And I am going to share my most favorite article regarding caregiving. Please take a few minutes and hop over to Huffington Post and read this article on When Caregivers are Honest it Makes Folks Very Uncomfortable.
I also commend you on finding someone to help with your wife. Even just a few hours a day of respite could help you both tremendously.
Please let me know if there is anything else I can do to help you.
JamesPL, August 7, 2020 10:10am EST
I commend you for doing all the things you need to do to care for your wife. Getting outside help to give yourself a break is also a good idea. You have to maintain your own mental and physical health to be an effective caregiver. You mentioned the heat in Arizona. Perhaps for a change in scenery and a break from the heat, you could take her to an indoor air conditioned environment such as a shopping mall. You could get some exercise without the sweat. Another option might be just some long drives. My wife and I have done that during this pandemic just to get out of the house for awhile. We would occasionally stop somewhere and get out of the car to stretch our legs briefly but we found just getting out for even an hour was a nice break.
Keep researching as you have been to find someone to come in occasionally. Alone time is important!
I wish you both all the best!
Matthew1, August 7, 2020 11:31am EST
Thank you for having the courage to share your story. While it’s heartbreaking and frustrating and so many other things, there IS hope! Writing as a stroke survivor 4 years removed from an ischemic stroke at age 47 , life can get easier.
Your wife is still in the early stages of recovery and that time can be confusing because there are good days and bad days that sometimes are back-to-back.
This is the time to come up with a plan for the short and long term. I love that you are considering part time help. This is HUGE! you need to stay healthy (emotionally and physically) and she may need another “voice”. You can also learn a lot from a professional about how to make boundaries and how to deal with the roller coaster.
Please consider talking with a psychologist about how to best handle your “new normal” and speak with neurologist regarding her moods. Every stroke and every person handles brain injuries differently so there are a lot of unknowns.
From my own experience I can tell you that anger , frustrationn and lack of patience is common for survivors but you must walk a fine line between helping a loved one handle her reality while not being treated unfairly . That’s where a physchologidt can really help .
Finally, information is power !! The more you know about her specific condition (where the brain was damaged, how badly, etc, ) the better you can face long term reality. Remember: if you feel you’re not getting the attention you need from doctors, LOOK FOR OTHER OPINIONS!!! it’s the best thing I ever did as I am still recovering.
Stay strong, firm and consistent!!! All the best to you both!!!!
JKViggiano, August 7, 2020 12:32pm EST
HI George. You have already gotten great feedback but I will add just a couple things. First, God bless you both. Stroke creates a terrible brain injury that is impossible to predict. Sticking together and looking for paths forward is huge in taking on this challenge.
Are there support groups in your area? Look online or ask for resources at the hospital. After my husband's stroke, we found a support group through the therapy arm of the hospital. Caregivers and survivors met together at the beginning of the meeting then broke into separate groups at the end. It was very helpful to talk to other caregivers. If stroke support groups aren't your thing, we also went to brain injury groups. All were helpful.
What about speech therapy? Speech therapy can deal with cognition issues as well. Rather than allowing ourselves to get too frustrated, we set goals for his improvement and worked on them together. We took on a team mentality rather than a caregiver/survivor mentality. We are 12 years post stroke and we continue to work as a team for his success. And we continue to celebrate any improvement, no matter how small.
I hope you both can find a way to laugh. When we were able to laugh at some of the crazy things he said and did, everything got better. It took a few years to get to that point, but it changed everything. Now when he is on his fourth time through, trying to explain something to me, we make sure it ends with laughter and applause.
Keep in touch George. You and your wife will find a way.
JeffB, August 7, 2020 12:37pm EST
Sorry to hear about your and her struggles together. You are totally allowed to vent and not feel bad about it. We are all human and each one of us has our limits. Even with those we love. My best friend had a stroke and I became his part-time caregiver, mostly on the financial side but it bled into many other areas I never thought I would have to deal with. Anyway, I found that I had to give myself breaks. I hired a financial manager for him two years ago which was a godsend. I also found a lot of resources in our local Center for Aging (this is Ohio, I did not see an Arizona one but they may be able to help point you). There is also a tool on the AHA site to find stroke support groups by zip code which might be a good outlet for you both.
Stay strong but also let yourself just be a man and take care of yourself as you are for her. Give yourself some breaks. Rest and recouperate.
planet9rz, August 12, 2020 9:44pm EST
My father in law suffered a stroke while on a jobsite in Alabama 2 years ago. The facility they took him to was not well equipped for his condition and it took almost a week for my wife to finally get him back to Pennsylvania after threating to fly there and come in with the authorities. We got him to Pittsburgh and after surgery and 2 weeks of rehab they sent him home as well saying there's nothing else thay can do. He seemed good for a while, continuing outpatient rehab for 8 weeks until they decided they couldn't take him any further. We did everything we could for the last year and a half finding ways to stimulate his brain and conversation with puzzles and word games. We are at a standstill right now as we struggle with him becoming irritable and refuses to go anywhere or do anything. We call every place in our area for help with rehab and possible inpatient rehab services and no one seems interested. Or its all out of pocket and his disability doesn't even come close to paying for it. My wife and I are at our wits end and do not know what to do anymore. If we cannot get him help he will only get worse to the point we cannot take care of him anymore. He has already become mean with my wife (his daughter). We wish you all the best and will try to take some of the advise we see in the above comments and hope we can get him the help he desperately needs. God bless
spanky, August 25, 2020 8:38am EST
I am so glad I found this board. It is comforting and educational. I am acutally married to the caregiver of a recent stroke survivor. My father in law, 74, recently had second "mini stroke". This one came with a vengance. He was in the hospital for a week and currently in rehab. He is having difficulty speaking and lost strenght in his arms and legs. My biggest concern at the moment is that he is having crushing bouts of depression. While I know that depression is normal after a stroke, I am trying to see what options there are. Too many times the knee **** reaction is to medicate. While I am not 100% opposed to it, I just wanted to know if you (or someone else you know), chose to medicate. I know one of the triggers of his depression is the fact that he cannot have loved ones around him at all times b/c of COVID. He feels like he has little support which is far from the truth. I will definitiely reach out to support groups as suggested here on this board. I am mentally exhausted. I can't imagine how my wife is feeling. Thanks everyone in advance.