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Dear Caregivers

I am more of an overseer of the care being given to my wonderful momma. My Mom suffered a hemorrhagic stroke earlier this year and made the transition from the hospital to a nursing home almost a month after the stroke. She suffers from paralysis on the right side. Not only that, she seems like a new person. Almost like a toddler. This broke my heart initially, but I have come to accept this. I have had trouble getting therapy for since for months, she had no insurance. When she finally got the insurance, the therapy department in the nursing home declared, "since there is no improvement, we cannot perform more therapy". I am at a stand still. I am trying desperately to get SOMETHING for my Mom. Another problem I run into is taking her home. If she WERE to walk again, the plan was to take her home. However, she still needs to be watched 24 hours a day. I'll have to change her, feed her, bathe her, take her to her appointments, continue to rehab her since most stroke victims need to have therapy to maintain their mobility. Everywhere I go people are saying, "Take her home, take her home". But I know NO ONE WILL HELP ME WITH ANY OF THIS!! I would be giving up my entire life! Her sisters will not be willing to move in with me and do any of the hard stuff. Out of three, two are visiting. Even if she walks again, I think it would be best for me (YES ME) if she stayed in the nursing home. I would simply be miserable having to be confined to a house taking care of my disabled mother. There...I said it. I am only 26 years old with a B.A. and a low paying job, no car, no money and no other real resources. Also, I have taken guardianship of my older autistic brother ( as well as my mother). I would very much like to see him live a fulfilling life independently one day. He is high functioning and can do many things on his own. I guess I needed to rant. What are some of your thoughts? the more I tell myself that this is the most logical thing to think, I keep thinking of what my family will think of me. Most of all, what is my Mom going to think of me??

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Jenni3521, I strongly believe that for everything there is a season. At 26 this is your season to establish your independence, to build a career, to date, to establish friendships, to make plans for your future. Bringing your mother home would tie you down and almost completely prevent you from doing what is natural and intended for you to be doing.

If mom seems like a toddler it is likely that the stroke caused dementia. What do the medical professionals say about this? What will your mother think of you? Sadly, her ability to think rationally may be seriously impaired now. But when your mother was well, would she have wanted you to sacrifice your life to do for her what can be done by professionals? Most mothers would be appalled at that idea.

What will your family think? Who cares? If they are not there to help you, if they are not willing to make sacrifices themselves, then they have no say in your decisions.

Your mother needs a strong advocate to see that she gets the best care available where she is. You can play that role. Your mother needs love. You can continue to be the loving daughter while other do the day-to-day hands-on caring.

Your brother needs a strong advocate. Bless you for taking on that role. Being burdened with the full-time hands-on care of your mother will detract from your ability to do that effectively. Would your mother want what is best for your brother (if she were in her right mind)?

Bringing mother home because of what others will think when it is not the best for you in this season of your life and it is not the best for your brother is doing the wrong thing for the wrong reason.
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I completely agree with jeannegibbs. You are a loving daughter and sister but you are one person and that one person can only do so much. First of all you have to take care of yourself.

I have had my Mother for 2 years, doing exactly what you describe. I would never allow my children to give up 2 years of their lives to take care of me like this. I was happy to do it but the time has come to move Mother elsewhere. The isolation is terrible and it wears on your health, physically and mentally.

Being a good caregiver of your Mother does not mean you have to physically everything. You can see that she is well cared for, safe and comfortable. Your plate is already full. You owe no explanation to anyone!

God bless!
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Wow! Thank you guys. It is nice to get such loving feedback from strangers. To jeannegibbs, the HCPs have not mentioned dementia. They mostly encourage me to leave her in a SNF. My cousins suggest this as well, as they want to see me get established. My mother, while in her right mind, never wanted to go to a nursing home. However, I don't think she ever thought she would have a bad stroke either. Ultimately, I will act on what I think is best. I just can't help feeling so damn guilty.
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Jenni, you have no reason to feel guilty. The people at the facility can provide good care for your mother. I agree completely with you, jeannegibbes, and littletonway. These are critical years for you, and you have so much responsibility on your young shoulders. I think you are making a very wise decision, considering how things are at the moment.
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If you are not willing or able to give up everything in your life and I mean everything. Friends, family, mental health, physical health, dating, traveling your only outings are to doctor appt. It's an ordeal to make an appt. to even get your haircut. (it's taken me 2 weeks to get someone here so iI can go) to get have lived with my mom full time for over a year and sometime just being able to go outside is amazing. Your young and you have a right to a life and it will be over if you brought her home. The level of care that your mother needs takes an army to succeed and they have the equipment and staff to handle it. You would be remodeling your whole house just to care for her. You are doing her a favor and justice of giving her the best care and decency she deserves. Be their advocate everyday and tell them both how much you love them, that's all you can do. I hope you can find peace with your decision, your doing the right thing.
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I'll do my best! I genuinely like going to see my Mom. Especially if I have done something fun for myself that week. My brother's a real nice guy. Still young himself. Just 28 years old. He said he'd like to be married one day and have a family. I want him prepared mentally for something like that. He needs a bit of help getting there.
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There is no reason to feel guilty. And if others in the family don't want her to go to a nursing home, then they can take care of her. If they aren't willing to do that, then you don't need to worry about what they think. They've left the decisions to you so they have no say in the decisions you make.
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