Not Resentment, So Much..

by Susan
(Boston, MA)

My situation is that I'm a single woman, middle-aged with no children, never married. I live with my 83 year old father who has Multiple Sclerosis in his childhood home. We moved here 10 years ago when my Mother died and my father suddenly no longer wanted to be in the home he was in, at the time.

Since then his condition has worsened progressively and he has been hospitalized several times in the last few years. Sometimes I'm thinking I'm not at all prepared to be the one to care for him emotionally, definitely not financially, feel I don't have the maturity. I'm still single and have a very active social life and up until a point I was working full-time until I was laid off more than a year ago.

I had been interviewing until my father fell ill and was hospitalized over the Summer and lately Ive only been looking for part-time work. This is also due to my own health issues.

I have an older sister who helps when she can but she has a full plate with her family and is also dealing with her own health issues and doesn't drive. I often have to deal with her issues, she too depends on me for help as she gets none from her husband and there's really no one else she can rely on.

I selfishly wonder, at times about not being able to leave the house, at all which is what I thought would occur once my father was discharged from the hospital & nursing this last time because it seems each time this happens he becomes more and more dependent. He had a discharge plan where he had a visiting nurse, PT, home care for awhile which was covered by his insurance but that only goes for so long.

We then hired a private agency whose personnel I tried to get to come particularly on days I thought I'd be going out but that didn't work out due to my fathers finances and I believe one of the workers was putting in for hours she didn't work. Right now we have someone come 3 times/week to bathe him and clean a bit but its not enough b/c I'm very disorganized and sometimes its hard for me to remember things like he needs to have diapers changed, soiled clothing, etc. and its very difficult for me to deal with and his bathrooming.I don't even like to go into the bathroom he uses.

Furthermore my sister, as well as myself have been dependent on my fathers finances, me, mostly for food shopping and errands but my sister would come and basically ask for moneys to maintain her household, pay for her insurance, medication issues. This really made me very angry.

It turns out my father is still very independent (he insists to be so) though basically wheelchair bound, he gets to the bathroom and bed on his own. It seemed as though I was going to have to be there very time he went to the bathroom and bed and I still anticipate the time when this will occur.

As my life is, though, socializing and seeing friends are my only out , I'm not able to vacation due to finances and having no one to stay with my father (for as little cost as possible)
so I'm still anxious about when that time will come.

My father also always liked to go out to eat and talks about it often but it had become difficult b/c he has accidents and his need to go to the bathroom, when he needs to go, getting him in & out of the house, his behavior in restaurants,i.e., the messiness,bad manners, picking food, other items off the floor when we haven't noticed.

One time he was reaching for a fork that he had knocked on the floor and he fell over in the chair, on to the floor. My sister has reminded me that he's old and he doesn't get to do much, anymore but sometimes when we go out she'll just sit and watch and not help, she says she does and it's something we argue about.

Also with my health issues its becoming difficult to lift, push a wheelchair in & out of the car and move him about.

I also become concerned about my fathers activities in the house, constantly doing things I ask him not to do for his own safety, i.e., grabbing anything off the counter I leave there that I'm cooking with, eating myself, i.e., frozen fish sticks, unpeeled oranges, grapefruit,other things. Sometimes its a matter of us working together in a small space. He has all his bills, paperwork on he same table he sits at and eats at all day and I've tried to straighten it up but I'm basically not allowed to touch it. Hence, it gets filthy with food, coffee, hot sauce. I tell him he can't keep these important things near food but there's no telling him that.

I just hope I'm doing enough for him in these years of his life, I always think, I'm sure this is not the way he saw spending it with a middle-aged, unhappy, unemployed, single daughter who's not always so patient with him. I'd like to be able to take him on vacations, something my mother had stopped doing b/c she couldn't handle it. They used to go to the symphony, movies, it all ended when she passed away.

He's always wanting to go apple pickling which we did a year or two with my sister & nephews but he needs to have access to a bathroom. He mentions going places which are almost an hour away to eat, Cape Cod, the North Shore of Mass in the Summertime as we did a few times but each place we visited for friend clams every Summer was too crowded, we could hardly find parking and the road and dangerous (albeit a beautiful area) pretty bad, he was unable to use to outside restroom and there was only one inside for which there was a wait, when he can't wait.

I don't want to keep having to tell him we can't go certain places b/c of his need for a bathroom when its not readily available.

Right now, we're living somewhat harmoniously but I still have to anticipate his next turn of health or with my sister, which stresses me beyond belief. I recently had my own breakdown b/c of everything going on and it makes me wonder what would happen if I wasn't here to care for him.

I just hope I can make these years a bit better and easier, happier for him.

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Go to your Local Council
by: Anonymous

You must get support from your local council.... as far as I know all over Australia they offer community Health Care Groups for the patient and the carer..really nice and fun..for both of you, even can arrange transport, respite breaks for you...up to 64 days per year.

Local organizations: church, clubs, old work mates, friends.....pull them in, drop any shyness/pride, etc.. live your life too, NOW!

Disabled Veteran Affairs if he was an off shore veteran in particular are amazing, incredible.

Go can do it! I'm 61 and my Dad is 91 terminally ill, Mum dementia..early stage.

For Your Own Peace of Mind
by: Anonymous

Please find your local al-anon or celebrate recovery group and learn what you can about breaking free of codependency. Yes, your dad needs you. Thank you for helping him.

It seems, from your letter, that your sister is leaning on you more than she should and you BOTH feel shes entitled to do so. You can learn to love, with limits, so that you can still meet your own emotional needs at the end of the day. Best wishes to you.

I Have a Thought
by: Third Sister

I have a suggestion about taking your Dad on trips. Trade in your car (or his car, if he has one) for a van that you can outfit comfortably with a travel potty (like is used for camping). Get the type of van that has blinds or curtains over the windows for privacy when he has to go.

If it happens en route, pull off the road and let him go into the back to use the potty. Make sure you get a handicap tag for the rear view mirror so you can park as close as possible to the restaurant, show, or whatever in case he needs his potty. When you get home you can empty it in his regular bathroom, hose it out and get it ready for next trip.

Good luck to you!

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