Wednesday, September 3, 2008

The Best Care that Money Can Buy

Today I was thinking about just how much work is involved in caring for a person with dementia and I wondered about people who were caring for loved ones on a limited budget. Like, what if I couldn't afford to put Mom in an assisted living facility, could I deal with the idea of putting her in a nursing home? I don't think I could, not at this point. But what about those families who have no choice because of financial constraints? They are burned out from caregiving. How much help is there really out there for lower income families or even middle class families? Not much in my eyes. Most of us are overwhelmed just by trying to navigate 'the system'. Throw in the financial burden and well, you can see why the stress level is so high. So I thought about what care is like in other countries. And I started to do some research just to find out what is available. I found this article which explains that dementia care in Europe isn't much better than it is here. But there are other ways to support the main caregiver too. For example, families can help. Unfortunately the burden of care is usually placed on one primary caregiver, usually a daughter, son or spouse. If members of a family cannot provide physical support there is always emotional or financial support which can be provided. If you're wealthy, then you can provide the best care that money can buy. But doesn't every dementia sufferer deserve that, not just the ones who can afford it? Long term care insurance can help fill the gap, but it can be expensive. So how do burned out caregivers handle it? How have you handled it if you are a caregiver?

8 comments:

Lily said...

At last I've found someone in similar circumstances to myself! Hang on in there. My experience of working full time and singlehandedly caring for my mum for nearly nine years has brought me to the brink of physical and mental collapse, with the result that I am now on Prozac, which I have to say seems to be helping me cope. She doesn't have dementia but is quite frail and since her stroke last Christmas, less mobile and more confused. I can't help thinking she would be better off in a residential home - she hates living alone and finds the responsibility and work involved in running her bungalow too much even with my help but can't live with me (soooooooo many reasons why not!), won't pay for home help and believes every scare story in the tabloid press about care homes. Sadly I see no solution until nature makes the decision.

cornbread hell said...

good questions all, robyn.

my mom's alf is being paid for by the proceeds from selling her house and the incredible generosity of my hard working sister.

the funds will eventually run out (sis can't do it alone) and sooner than we would like, for sure.

when they do it will be a tough decision:
if she's *far enough gone*...

1.) we'll consider a nursing home and keep VERY close tabs. it will be in my sister's small town, not big city dallas (the nightmare stories are much worse here) and i will move there to make daily visits.
2.)if not? she and i will probably move into my sister's home in west texas.

i feel for those who don't have the means.

reading between the lines you may see the/our real dilemma - since putting mom in the alf we have been guiltily *hoping* she will not outlast her limited funds.

that's not something i'm proud of to say the least. or even often admit. but i'm afraid it's the truth.

Annie said...

Robyn, this post hits very close to home. You mention emotional and finanacial support by family if physical support isn't possible. I have three siblings. In the almost three years I've been taking care of Mom, two of them have not even once called to see how Mom and I are doing. Not once. Financial support? Ha, what a joke. They won't come take care of Mom so I can have a weekend off, yet they complain that I am using Mom's money frivolously when I take her to the nursing home for a respite weekend once a month. I'm really trying not to be bitter and resentful, but my last weekend off was mid-July. So let's just say I get by one day at a time.

Sorry for venting in your comments, girl. Especially since it sounds like you never get a weekend off?

rilera said...

Lily, First let me say that you are wonderful to care for your mother as you do. It's both a difficult and rewarding job. It's hard for our parents to take that step and move to assisted living, even though we know it would be best for them. Hang in there and know you are in my thoughts.

rilera said...

Rick and Annie, You two are the most devoted children and caregivers. There is a reward for us in the next life. Annie, feel free to vent. I know from where you are coming. My sister visits when she can and my brother is sympathetic by hasn't seen mom in 8 years!

Rick, I know what you mean about hoping Mom doesn't outlive her money. It's a scary thought to me too and the main reason why I've held out so long and kept her at home with me.

I'm not looking for any handouts from the government but there has to be more that can be done to help out those in need. Especially when you see so much wealth amongst so few.

~Betsy said...

I worried about the same thing constantly when Mom was alive. Her funds were very limited - just enough to pay for her meds, really. Yet she had a really good insurance supplement to her medicare.

As for facilities, the key is as Rick said - DAILY VISITS! The squeaky, well-visited wheel absolutey gets the grease in this situation.

J said...

I try to stay upbeat. We've used what little savings we had. Mom can't be left by herself no more than an hour or so. Then the whole time I'm gone for that hour+/- I'm worried about will she stay in bed so she doesn't hurt herslf while I'm gone. Family means well but their way of dealing with the situation is that what they don't see... they don't have to hurt or feel so quilty about. My husband is my lifesaver. I've had to take low paying jobs to be able to work in a way that either me or my husband are at home. Had to take leave of absence and was told that my job couldn't held open for me. I can't remember when I have slept thru a night. There is never a meal that isn't interrupted. We haven't had a weekend off in the last 2 years. I don't know what it is to go out to eat with husband or friends. We don't have any type of social life.I am so burnt out that I can't think. I have chronic pain every minute of my life. They tell me my diabetes, depression, etc. won't get better until I learn to deal with my stress levels. *snort* Yeah right! And then when I vent like this I end up feeling uncomfortable and not wanting pity or people to think I don't love mom. Tonight is a bad night. I am so out of it that I am having shaking a tremor spells. Nothing unusual has happened today it's just that sometimes the helplessness and hopelessness hits me. I'm on Zoloft at night and Welbuitrun(SP?) day and I still don't know how much longer I can hang on. We don't have much income and now we're out of one pay check. Mom only draws SS and has Medicare Medicaid.

cornbread hell said...

saint j,
hang in there.