What's the best you can give/do for your caretaker?

[tellnhelen]

When I logged on tonight, I saw that November is "Caretaker" month. I had a conversation today with my caretaker, my twin sister. We are 57 yr old. I was dxed almost 15 yrs ago. She didn't get the MonSter.

Bless her, she has helped me in assorted ways; mostly transportation (lifting scooter in/out of car) Letting me on family vacations. Sometimes She drive me somewhere. I like to get out of the house. I like to go to church sometimes. I have reciprocated by sending her young son to summer camps and giving her the down payment for a new car.

I have helped myself by arranging for outside help and trying to live somewhat independenly. As my walking declined, I purchased a scooter. I get to my appointments and job by the local paratransit service. I grocery shop by Internet. I hire people to clean my space and my clothes. I eat what she prepares for her son or I prepare something for myself.

In our conversation, she told me that she was tired and that I should find myself an aid when we move to NC next year. It might sound a little cruel but it's honest. She doesn't want to be responsible for me. MS wasn't in the plan. I had not realized that what she does for me was a burden. I think the real burden is that I HAVE MS and it has progressed over the years. Nothing I can do about that

I heard her!

I think the best thing I can do for her is to get a separate place to live and to find an aid (s) who can help with my meal preparation as well as the cleaning. Who knows...maybe I'll meet some nic people and make friends.

What do you think? Should I try to live completely separate? What should I do/give my caretaker?

[Windwalker]

You can still do so much...you have a job? There are a lot of gaps in your post, for such a difficult question, but it looks like you live with your sister and her family.

Maybe it's not that your such a burden, you seem to do very much for yourself, maybe she want's to be alone in her home with her family...just her DH/DB, if she has one, and kids?

You, imho, are capable of living on your own, with a caretaker to come in maybe 5 hours a day, 5 days a week...and not your sister.

I think your attitude about meeting new people is Right On.
You will open your life up to new and perhaps wonderful things. Yeah...even with MS.

[empirerecs]

Tellnhelen-

you are brave and strong. I think you are doing so much already, that's wonderful! I think your sister just wants to be your sister and that's kind that she spoke up. Caregiving can rob a spouse/family member of a valuable relationship. It's such a double-edged sword, just not fair. I have a dear, dear friend dealing with it with very little options. Her husband cares for her and he also has medical issues, but he wouldn't have it any other way; but it seems that all they do involves her care, they have no time to just be a couple.

This has been on my mind because my sister does not speak to me anymore and I truly do not know why. I now believe that it might be because she thinks that I will want her to care for me. I don't, - I'd rather be part of her life now (we live several states away). I have a long way to go, hopefully, but she is my only family. In my case, I'm going to look into an assisted living care facility in which I can still live in an apartment type place and take care of most things but then when I begin to need more help it's there as I progess. Maybe that is an option for you, an all-in-one package?

I wish you the best in your decision and I'm really happy you have their support!!! (I just moved to NC - it's great!)

[tommylee]

I think your attitude about meeting new people is Right On.
You will open your life up to new and perhaps wonderful things. Yeah...even with MS.

Give it a whirl!
You may find it agrees with you to feel more independent.
If it does not go well, I bet your sister will always be there to help when you need it?

It may be good for your relationship with your sister if you have your own life independent of her.

You mentioned , you enjoy going to church?
There is a good chance there are many people at your church that would enjoy the oppertunity to help you also.
(but you need to let them know help would be welcome.)

Best wishes on your new adventure!

[kif8skip]

I hope you will find a new situation that suites you - a assisted living facility as mentioned above may be just the thing.....

[mrs.khan]

being a carepartner I can only tell you what i would want and that is a day without MS as the center of attention. it just seems to take over the relationship...and then you know what i love my husband very much but every time i have a problem i cant discuss it or share it with him because to him i have no right to complain when he has it so much worse.. and my NOt being upbeat or supportive ALL the time "gives him stress" which make his symtoms worse.
As much as you love someone it is not easy when u cant laugh or cry on will...must watch every word every step. It is tiring. Its exhausting with all the resposibilty added.
I think the best thing you can give a careperson his APPRECIATION and the SPACE TO BE JUST human. Because in the end we all just that...human

[lori]

I'm always erring on the side of frugality. Assisted living is very expensive. If all she is asking is an aid, maybe you could afford to pay some one who could also be of great help with her own cleaning, cooking etc.

But the most important thing is that you remain emotionally close to your twin. You sound strong and understanding. I hope an honest conversation with her will help figure out what is best for you both without hurt or guilt.

Best wishes,
lori

[onthesamepage]

reply to mrs.khan

I hear what you are saying about a day where MS is not the center of attention! Sounds like he needs to hear this ... my disease and my centering on me because of it was a big part of my own marital trouble that eventually led to divorce. I wouldn't suggest threatening him with such a thing but he'd be wise to hear me when I say stay away from self centering thoughts and complaints because before you know it it saps the love, the well runs dry and suddenly you're in a worse place than you were before!