Hello Folks, I'm new here to the community. I'm the sole care provider for my wheelchair bound wife. She was diagnosed with MS in 2012 and quickly went from walking with a cane to being completely wheelchair bound. The last two years have been brutal...seven days a week, no break. I'm physically and emotionally depleted. She is angry and bitter and as her condition worsens so does her mental state and I take the brunt of it. It's tough to find anyone to talk to much less vent without coming across as a complete asshole.
Are there any people ho could even come sit with her for a few hours once a week just to let you rest?I understand how hard it is.....
IS she eligible fr any day programs that could watch her a few times a week at a facility?
Im so sorry you are going thru this- its so hard
Im not exactly sure where you live or what state you live in, but i would see if you can get some sort of day program and even if getting her out of the house is difficult, they can come to her and assist. I work in this field along with have my boyfriend. There is a thing called respite and it is exactly for this reason to give caregivers a break. If she can get in to a program that offers some assistance even once a month it would probably elevate some stresses on you and her. I know exactly how hard this is. I hope you can get her in to some sort of program, even if someone came for an hour and just talked with her. I know just different interactions with people can totally change the dinamic with the situation. thats whats happens with my boyfriend when he hasnt interacted with anyone besides me hes miserable. its almost like a dog in a cage. if you keep someone in a cage they are gonna be impatient and miserable. people dont know how important social interactions really are. please feel free to message me to chat or vent!
you need to express what YOU need. And make the family or good friends help. " I need to be able to get away a minimum of once a month- who will be coming to relieve me"? Maybe its only for a n evening once shes in bed. Maybe its all weekend- but you NEED to tell people what you need from them. Good luck
I know it's such a small thing to say, but I wonder if you are doing too much. Leg shaving is not necessary. Many cultures do not shave their legs or under their arms ever. I am hoping you can minimize your duties so that you can survive. I also hope that you will do what's best for you, even when she is telling you no... I mean like with the suprapubic catheter. You mention low finance, and I wonder if you can have your wife's medicare pay for a nurse to help your wife get used to the suprapubic catheter. Last of all please know that if you absolutely are at your own last strength, do not feel guilty moving her to a nursing home/resthome where they care for her physically and you can visit her for companionship and not kill yourself with the load you have been carrying. -Sparrow. PS I saw you on another page first, so I already asked you for your update since 6 months have past. You can respond here or there. Thank you!
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If your funds can't pay for Homecare or anyone to come in daily, there is a program that my family used for my Mom when we could no longer care for her.
It's called Medicaid.. Where you can have someone come in daily and pay them a hourly rate, or will pay for nursing home care which is where my Mom ended up for nearly 5 years. Yes, there is a cap on the allowable assets the person can own (rightfully so).
Not sure why if you're thinking about lotto to care for your wife and so stressed out why this wouldn't have been already been pursued?
BTW- my wife had a stroke 2 yrs ago and I'm her primary caregiver but luckily for us, my 24X7 focus on her doing home PT has keep her out of a nursing home. I can relate to giving up your life for a spouse of family member, but if it gets too extreme start looking at Medicaid, like my Mom, your wife likely might have preferred it rather than your misery.
I retired early to become a caregiver for my wife, what I miss the most is a clear minded conversation with another person who understands what we go through. I worked hard my whole life and saved for our never will be seen retirement, so now she will not qualify for Medicaid due to the 'assets' restrictions.
Good luck!
anyone can be trained to use that hoyer lift and she needs to understand you NEED time away from her to be a positive and helpful caregiver- YOU need to tell others what your needs are ! good luck
I feel so bad for both of.you. Your poor wife didn't ask to be sick. I know I would be really hard to deal with if I had to deal with MS.im going to keep you both in my prayers. It must be so hard on you to see her like this. I'm sure she.truley appreciates what you do for her. I know how frustrating being a caregiver can be. My 87 year old mom moved in with me last May. Do you have a friend or does she have someone who could come over so you can get out for a few hours? I have to get away from my mom she drives me nuts sometimes. I hope you figure something out. Jennifer
Hi. I am Jill from Southern Illinois and taking care of two adult sons. One is in a wheelchair and the other is schizophrenic. I am also looking for programs and resources in Illinois and totally understand exhaustion. Nice to meet you!