Caregiving Reality Check

by Bonnie H.
(Northern California)

I'm one of those people who can't bear watching someone suffer who needs help. Consequently I've been in the caregiving position numerous times over the years.

It was no surprise, then, when my 93 year old mother broke her shoulder and I agreed to let her live with me during her recovery. She moved in 1 year after I had lost my husband, and I thought taking care of her would help pull me out of my own grief. At least that's what the experts always say - help someone else and you'll feel better.

Sometimes it works. This time it didn't. For one thing, caring for a parent is like having a baby who can talk and argue and tell you what to do.

I came to grips with that about the time I discovered the nurses lied - her recovery would never be full, so she should live here full time. (What we found out later was that Medicare was going to stop paying for her in home nurses so they basically needed to dump that responsibility on someone else.)

She has been here 17 months now and the quality of my own life has gone down hill, while the quality of my mother's life has exceeded anything anyone expected.

She's now in better shape than me or my siblings - and we're all in our own senior years (66,68,71 and 73) - right at the ages when our own health problems are beginning.

I, for instance, was diagnosed with severe COPD and now struggle to comply with my own doctors and therapist's instructions while also taking care of our mother's needs. Before you suggest it, we HAVE seriously considered finding a nice senior care center for our mother, which she can well afford.

But here's where the clincher comes in ... we spent months making sure she was comfortable enough here that she'd relax and and settle in. She now loves it here. She even has her own bird feeding station outside my big living room windows, where we've pushed a table up to the table so she can watch them whenever she wants.

The entire house has been rearranged so as to suit her needs for moving around safely. Items in cupboards and the frig. have been arranged where she can reach them. I've given her her own bedroom with a full bath, which have also been redone to suit her needs. She's got full charge of my new big screen TV now (since I don't enjoy any of the shows she watches.)

Lots of her furnishings now take up room in my home - which I had just redecorated in a minimalist style before she got hurt.

I never even finished painting or putting the huge tree
stencil and leaves across the top of one high ceiling because there's no point in doing those things when they'd only be hidden behind her furnishings and pictures.

My siblings knew when Mom moved in how important my new decor was to me after my husband died, and we all tried to stick to that decor but, one by one, we gave in to Mom's preferences and now it's at the point where I don't even know my own house any more when I walk into it.

I have, literally, detached from it. This isn't our mother's fault. It's OUR fault for not having developed a real plan about such things BEFORE Mom ever moved in, not to mention a surrendering plan if/when we decided we couldn't take it anymore. At first it seemed like no big deal.

So what if her little pics are on the table I like keeping cleaned off? She deserves to have her things nearby, right? But you have to stop and think of these little things before you choose to become someone's caregiver.

Know your limits and let others know what they are and stick to them no matter what. From my own experience I can honestly admit how resentful I have become - not of my mother, but of our circumstances.

The biggest problem is that we've made our mother SO comfy here that none of us has the heart to make her move somewhere else after all this time.

Somehow we didn't think about needing to identify our limitations way back when, or honoring our own needs. Meanwhile I'm stuck with 24/7 caregiving oversight, my sisters give up 2+ days a week to stay here with Mom when I go to pulmonary rehab, my brother and his wife make dinners and bring them up for the freezer - all things that are truly wonderful.

But ... we are tired. We resent we don't have adequate time to focus on our OWN senior citizen needs, especially concerning health issues. At this point we all fear that by the time our mother leaves, we may not have much of ourselves left for enjoying the last of our years.

It is a serious dilemma for people like us who have prided ourselves on being a close family and who would do anything for our family members. PLEASE, before you consider doing this kind of job, stop and realize what you will be compromising with beforehand, because although our mother is happy as ever, all of us kids are wiped out and growing more resentful by the day.

There isn't even any place to direct our anger about it either, so we simply count on being supportive of one another, which helps a lot but doesn't solve a darn thing.

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by: Anonymous

All sounds so familiar....a feeling of isolation, who to turn to....alone!!

Judy's Quick Observation
by: Anonymous

I wrote my original post some time ago. Since that time we did hire someone to come in and help out part time.

As my mother's health and strength was regained more, we discovered our mother could do a lot of things for herself so we let the hired help go.

We have since all learned to just do our share on certain days and it works out for one reason: it has to.

Coming to terms with that reality was the hardest aspect of caregiving for me to come to terms with. Now I just try not to think about the loss of my privacy or ability to have things the way I want them in my own home, because there's nothing I can do to change what is.

That's what this journey has been about for my siblings, myself and even our mother - coming to terms with it and just carrying on the best we can.

The ol' Assisted Living Distraction
by: Anonymous

Ive been taking care of my mom for four years. Many years ago my brother found a beautiful assisted living facility near him and his family and put a down payment to secure a place for mom when the time came.

We all toured it, she marveled at everything, we even imagined placing her furniture. It was all grand and wonderful. She smiled and agreed to everything.

The day we left my brothers, she told me me she never wanted to leave her home. I asked her why she just did that entire pretense and she said she didn't want to hurt my brothers feelings.

Well guess who's feelings she could care less about?

Here she is, in her home, getting just what she planned for her life. Plans for my life? On hold for whenever. They say a lot but see if your mom really goes. I doubt it.

Re: Judy's suggestion
by: Anonymous

I'm glad you suggested that, because it leads to another dilemma we've experienced, especially me since our mother is in MY house.

My point may sound simplistic and selfish, but it's very real and pertains to the ability of preserving the sanctity of your own home and privacy - both of which I've already given up. I am SICK of people coming into/out of my house on account of my mother being here.

Nurses and therapists came constantly until medicare told them to stop after 6 months, at which time I felt kind of relieved. Later we did hire a wonderful helper to come in 6 hrs/3 times a week so I could get away, do errands, or whatever else to give me a break.

Trouble is, after awhile I ran out of things to do, places to go, and the cost of gas for trying was more costly than I could afford. Worst of all, the helper did NOTHING but sit here all day for the only purpose of being here in case Mom needed something which ended up being very little.

So what was the point in keeping her on? Plus our mother was insisting we let her go because she was tired of paying someone so much who did so little.

Since that time my siblings have really stepped up to do more than before, which has led to 4 different people doing things 4 different ways in my house.

I KNOW they mean well and I love them for it, but sometimes I just want to cry when I go to get something that's not where I always keep it, or they used some kind of weird wax I don't like having on my furniture, etc etc. It's like having too many cooks in the kitchen at one time.

I keep telling myself "this is only temporary." Some days it's not enough though, and I've reached a point where I don't even care if I live here any more or not.

On the brighter side ... someone in my pulmonary rehab gave me a book this week on some beautiful senior apartments nearby. When I showed Mom the book, she asked if they have any for "assisted" senior apartments. She was even a little interested in them, so maybe this will be our solution.

Just a quick observation
by: Judy

If your Mom could afford a senior home, why not use some of that money to hire part-time help to ease everyone's stress and improve everyone's health?

I know it won't help with losing your private space and all you have to give up to keep her comfortable, but, sometimes a little helps a lot.

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