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Caregiving for wife and raising a small child
My wife is post stroke 2yrs 8 months now. When she had her stroke our son was only 14 months old, still breastfeeding. To remember back on things I don’t know how I got through the month and a half without her helping me. She has aphasia and a number of complications post stroke that I’m still learning to manage. She was a very successful person in life, career, and always has been a go getter at everything she applied herself to. So I thought she will tackle this situation just like every challenge she has before in her life. And for the most part she has. What I didn’t understand was the difficulties that come with aphasia and post stroke care. The lack of communication and the endless visits to the hospital. The medical bills, learning how to raise a child with minimal help from her as she needs a lot of time for rest and rehab. This has been the hardest thing we have ever dealt with in our lives. We have been together for 18 years now and I love her more than ever. She has always been an amazing person and continues to fight for herself to get better. She will never give up, I admire her and wish I was more like her in that respect. Don’t get me wrong I’ll never give up on our life together, there are just extremely frustrating days, especially with a 3yr old. Sometimes I feel like giving up. I had to leave my job to become her primary caregiver, we paid someone for a while to be at our house until I got home from work, but with her having seizures and constant trips to the hospital, I felt it was best to be home with her. After all I know her best and know every sign when something is not right with her. Being a full time caregiver is just as hard if not harder than having a 9-5 job. You are caring for the one you love so dearly and watching her go through this is heartbreaking, and I just want to take her place as I know she would be way better at this than me. We do have problems in our marriage with communication, but that’s to be expected living with someone who has servere aphasia. I find myself having to guess the words she trying to say. Sometimes I’m right and sometimes not so much. Our son has always been someone who has tried to help mommy as he learned to talk. Which is pretty cool to see. Just glad I finally found somewhere I could vent a little bit with this site, hopefully someone will read this and will feel like they are not alone. Thank you for reading this, and please reply if you have any feedback, or you just want to tell me your story. I would love to hear and possibly give any information that may help your situation. Sincerely, Kevin
AHAASAKatie, January 17, 2019 8:40am EST
Thank you so much for sharing this! I can only imagine how much is on your plate at this time. I can share the ASA resources we have on family caregiving with you. I also have a favorite article about the realities of caregiver that I have returned to many times in dealing with family members. 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. And finally, know that you are not alone- we are here to listen when you need to vent and when you need to share your joys as well. Best Katie
Caryn, January 17, 2019 11:18am EST
Dear Kdogg240 –
Thank you for sharing your story. I can tell by your post that you are a very loving caregiver to your wife and she is so very lucky to have you there with her. When we take our wedding vows – to love through sickness and health – we don’t envision the catastrophic nature of the aftermath of a stroke and yet, here we are, with no instruction guide. I wish I could offer you some amazing words of wisdom but the reality is that most days, I just punt – A LOT! At the end of the day, I know that if the tables were turned, my husband would take care of me and so, I try to give him the most comfortable environment I can, to help him heal and be the best person he can be. I don’t know why we were selected to take on this role of full time caregiver but I do know that God, in his infinite wisdom, has a master plan and he does not give us more than we can handle.
When I am having a bad day, I am reminded that “We don’t know how strong we are until strong is the only choice we have.”
Kdogg240, January 17, 2019 2:11pm EST
Thank you both Katie and Caryn for the advise and words of support. It is nice to here from people who get it. So many people just really don’t realize how difficult this can be on a family. Sometimes just a few words can be comforting to know your not alone. Positive words especially can help you get through the day. Some days that’s the only way we live, day by day. So again ty for taking time to write back. It means a great deal to me. Sincerely Kevin
taurabarr, January 22, 2019 11:51am EST
Hello Kdogg, thank you so much for sharing your experience with us. This forum has become a place of inspiration, hope and most importantly connection to get us through the tough days that sometimes never seem to end.
In your words, I can feel your pain and I'm praying for you and your wife to find peace, continued love, and joy in the midst of your trials. I also want to say thank-you for supporting and loving your wife as much as you do, making the sacrifices you've made and modeling these amazing virtues for your child. Thank you.
When bad things happen, we try to understand them or make sense of them and that often leads down the road of disappointment, because unfortunately, some things are simply not explainable. During my personal recovery, I tried so hard to understand why this had to happen to me and although my husband was so supportive and loving, he simply did not understand what I was truly going through......and I couldn't explain how hard I tried. So even if your wife could speak fluently, often the emotions, fears, and anxiety's that come with our personal trials are often impossible to translate. So, continue to support your wife in the way only you can. Tell her its okay if she can't express her feelings, let her know that you can 'feel' them regardless of what she has to say. Fill your cup, and find time and support for your healing. And always, always move past the urge to understand and simply begin creating a new beautiful life that you will share with her and your child.
We are all lifting you and your family up in prayer, love and support. Big hugs :)
JKViggiano, January 22, 2019 2:49pm EST
Hi Kevin. You have already gotten some great responses but I will add my 2-cents worth. Damaged language and cognition are tough nuts to crack. My husband only had a few random words after his massive stroke and still struggles to organize his thoughts. What helped him was around the 4-year mark, he started reading out loud. He read the same text over and over so it was easy to see his progress in saying words in the correct order. He didn't always understand what he was reading or even remember what he read but it helped him break the cycle of broken speech. We practiced certain phrases so he could communicate some usual needs. Sometimes he got it right and sometimes he didn't but all the effort moved us forward in both communication and in our team spirit. We are almost 11 years post-stroke and at home in a calm environment, he is quite conversational. He still struggles but NOTHING like he used to.
The advantage we have is that he is perfectly healthy. His stroke was a random event with no real explanation for why it happened. While it is a huge bummer that it happened at all, good health has been an advantage in our recovery efforts.
I'm pretty sure every caregiver wonders if they can survive the experience. I used to cry in my closet so no one would know how hard it was on me. I encourage you to keep fighting the good fight! You can do this together. God bless all 3 of you.
Kdogg240, January 22, 2019 6:45pm EST
Thank you to Taurabarr and JKviggiano for your support and words of encouragement. Any advice I can get on how other people cope with having a stroke of caregiving is extremely helpful. This is the first time I have opened up about my wife’s stroke and aphasia and the words of others have givin me comfort and a sense of knowing what I need to do moving forward. I cannot express enough gratitude to everyone who has offered their priceless advice. It’s nice to know other people understand and are willing to share their experiences without hesitation. I hope to receive more advice as that is what I’m seeking from these post. Thank you again!!
Kindess regards Kevin