How do you deal with it.... when no one understands? (disabled, friend)

[sfcambridge]

Thank you very much, to everyone that let me vent.

I have wished that I could find a support group. There is one caregiver support group in my town, but it is mostly a much older crowd who have family members with dementia. Progressive dementia is truly awful, and seeing what some spouses are suffering through is heartbreaking. But the group has not been as helpful as I had hoped. Our situation is so different.... But sometimes it helps to listen.

It is true that I had one older previous co-worker (before I lost my job again...) in her 60's that could relate a little. But it actually disturbed her, as she realized "she" could have been one of my parents... and have these horrible things happen to her. She moved away. And I actually don't know anyone here/have friends here, as I moved here only to care for my parents. The "phone friends" have long disappeared.

I have to find an outlet/different friends. Just hard to do when you are broke, and your life is so centered around caregiving, and you need to be studying/working/looking for a job if you have free time.

I have been struggling with my father for years to get more support in place for him, but he fights every step of the way. It is the only way he has some control over his life.... by saying no to me. Some days I can handle it more then others.

You have to be very poor in our area to qualify for much, and as my father is very frugal it is very difficult to get him to pay for it but THIS IS WHAT THE MONEY IS FOR..... I've also found that our support services for the elderly don't really fit for us. My father needs more help with accessibility/disability/wheelchairs etc... but the disabled resource groups refuse to help us... to even give us advice (!)... because he is over 59. Let me tell you, it really hurts when a non-profit for the disabled wont even help you out!

We have one woman coming once a week for 4 hours. And he constantly complains about her and threatens to fire her. And she isn't very good. Half the time I have to be there to direct her anyway. The quality of these workers is very poor... even when you try to go through an agency to hope for better screening.

So far I have found the best support through reading about other people's experiences. I appreciate you guys taking the time to help me. Thank you.

[linicx]

^^ I'd laugh, sfcambridge, except I've been there. Some state laws are asinine. I bought wine by the case because the doctor wanted my spouse to drink it every day. The worker couldn't take me to get it because I could crawl in the back while she was driving and remove the back seat to reach that case and drink 4 gal of wine in two blocks! Can't take you to the only grocery store in the county to buy groceries if you buy cigarettes or wine. I can't get on the floor so I can't clean behind the toilet -- two blind home owners I am supposed to help can do it; they have kids. The kids lived 1000 miles away. I played with the county health and a couple of other useless home help groups until I found a gem that has been with me through thick and thin for two years.

They are out there, but boy do you have to kiss a lot of frogs before you find your princess. Don't give up hope yet.

[Briolat21]

OP - Sorry that you're having such a hard time.

For me - taking care of my parents started in my early 30's, with simple things - such as helping them with maintenance around their home. My husband and I quickly started spending 2 to 3 weekends a month at their home, helping them with things they couldn't easily do anymore.

Then - after moving away due to a job change, and my parents having some major health challenges - we moved them in with us (after a brief stint in a nursing home) - when I was in my later 30's.

My contemporaries couldn't understand it when my husband and I were spending our weekends mowing my parents yard, and going grocery shopping for them (or picking up the dry cleaning, or helping them with car maintenance).

Because my contemporaries were all in the "baby #1, baby #2" world. Which - since we haven't had children, I will never understand.

When my folks moved in with us - I didn't really bother to try to have people understand it. What's to understand? It had to be done. We did it.

I don't truly understand their parenting styles (sorry - modern parents seem crazy based on the stuff they say). But I can appreciate they're doing the best they can for their kids. They don't truly understand using a hoyer lift to lift an adult out of bed and into a wheelchair, and missing work (thank you FMLA!!) to take dad to the doctor. But - they know I'm doing the best I can.

And that's what matters. Sometimes they vent about their kids (tantrums, weird obsessions and the like), sometimes I vent about my folks - or - more likely - the home health aides.

We don't truly "understand" the other situation, but we recognize for what it is - imperfect people trying to do their best by the people they love.

Good luck to you OP. Do your best, but don't make your self crazy about things you can't control. Like the opinions of people who haven't been in your situation.



best to you!!

[migee]

I again point out that the aides are in a difficult situation.

Think of the work they have to do with the elderly and disabled, and how they have to put up with their sometimes grouchy personalities, distrust and every other thing.

The aides make minimum wage. So, think about the fact that if they are trying to support themself and a child, and perhaps also be going to school to better themselves....It just takes much out of them.

If the wages are $8.50 per hour, and they have to travel to get back and forth, dress up in a uniform or decent clothes, provide their own food and drink, etc. etc....they are not taking much home.

Look at an aide that works 5 hours per day for you, and has to drive 20 miles back and forth to work: (The gov.t allows $0.55/mile, which does not really cover the costs of gas, oil, repairs, insurance, etc...).

Travel - 20 miles at $.55 = $11.00/5 hours = $2.20/hour

Wages $8.50
FICA.Medicare (.57)
20 Miles @ .55 (2.20)
clothing/cleaning (.50)
Own food/drink (.80)
Other Misc. (.50)

Net per hour $3.93

At 5 hours = $19.65

So, even if you dissallow some expoenses...What?..They are netting $21 per day? Probably near the same if they are taking public transport - maybe $3 or $4 more per day. - So, $25/day or $125 per week....WOW!!!!..."Sorry kid, no movie this week, or even this month..."

Not much to live on, is it? - Especially if they have a child...So, they work 2 jobs...and they try to go to school to improve themselves.
So, if they seem tired....it is because they are not making much.

What would you do for a miserable $4 or $4.50 per hour?...Take care of a sick person?...I would sooner pack bags in a supermarket and not have to put up with the crap from the patients and their families that think they have a high priced servant working for them...

[Briolat21]

Okay - now I'm going to agree that aides jobs are awful. And I'm going to agree that that's probably a large reason why it is hard to find good aides - especially for home care.

However - that math example is awful.

They would be eating or drinking whether or not they were on the job. No job (unless its in a restaurant) provides food to its employees. So - if they were bagging groceries at Safeway they'd still have to provide their own food. So that cost can't actually be factored in.

The 0.55 per mile is an allowance (probably in the form of a tax deduction). So actually, that RAISES their wage. Not subtracts from it.

However the cost of transportation (gas, bus token) is a direct cost of employment and you are right - that would technically reduce their net income.

As far as taxes - again - that's no different than if they were working in any other job.

All that is to say working ANYWHERE in the country for minimum wage is AWFUL.


That's why we don't pay minimum wage. We pay significantly above minimum wage, however it is still a low wage (Sorry, all we can afford). And we still find it difficult to get responsible, reliable workers.

I feel bad for the workers who have no other choices/options (for those in that situation) - however, I know that when I worked low wage jobs, I still worked hard and was very conscientious.

Still looking for that.

[brightdoglover]

I can add nothing except my thoughts to OP and people in that position.
I have found in telling people that my father is in-care for hospice, that virtually everyone has that "shadow life" of having been in the same boat. I realize that it is very different from the OP's situation, and bad on "friends" who don't know how to say, "I'm sorry" when there is nothing else to be said. Also, "What can I do?" should go a long way, and people should only ask with the understanding that they can only do some things, but a friend should be willing and able to do something.
I had a friend with a wife with a terrible brain tumor. They were in their late 30s and he joined a caregiver's group, and yes, most people had spouses with dementia and he didn't find much to help him there.
I sincerely hope the local healthcare system, whatever it is, has some sort of social work referral or *something* for the OP. Thoughts are with all of you. I realize how fortunate I am that my father just wants to go in peace and comfort, sooner rather than later, and accepted the nursing home easily, especially when I pointed out how much that would help my sister, who lives nearby.

[sfcambridge]

Thanks for sharing your story Briolat, and for your words of support. I am impressed by the dedication you showed to your parents at such a young age, and I'm glad you have a supportive husband. I can imagine that would be a strain for many relationships.

Thanks Brightdoglover. I do appreciate hearing "I'm sorry.." ..... so much actually. That's usually enough! But you hear it so rarely. More often, people try to tell you how to "fix" things. I know they are trying to be helpful, but it can be a little hard to listen to when they really have no concept of what's going on. I guess just a supportive ear would be best.

So I have learned long ago that only others who have been in similar situations will understand.

So I don't talk with my friends about these things. But then they get the impression that everything is "fixed" and fine.


With regard to the Home Health Aid issue, it is a tough one.

I completely agree that being an aid can be a hard job and minimum wage pay is inexcusable. We purposefully hired one from an agency that is known to pay their employees well and give benefits, and many employees have worked there a long time because it works well for them. We figured such a place would have better workers, who were vetted well.

$21 per hour for someone with CNA training (minimal, I know). I don't expect her to do anything medical except to remind him to take his medicines, do his self care etc.... Just reminders, and a few household things he can't do (take out trash, do a load of laundry, wash his water bottle etc...) and then try to get him out of the house.

My Dad treats her to dinner at a restaurant almost every week. Or instead he'll pay for her to work out at the gym with him or take her to the movies. She lives close by. She snacks on whatever she wants out the house, we keep her preferred drinks for her etc... And she is only there once a week for around 4 hours.

But she is not a great aid.... She can be a lot of fun for my Dad because she loves going out and doing things and is a talkative "companion", but she doesn't remember any instructions, doesn't follow directions and talks on her cell phone constantly. For the first several visits, we would purposefully drop by the house and find her sitting on the couch watching TV talking on her phone. Even though she had a list of things to do. My father would be alone upstairs in his bedroom. She is late every single week. Last week, she arrived 1.5 hours late. For a 4 hour shift.

I finally had to make her a detailed list every week where she has to check off every thing she does, and call me at the end of the visit. She still does a poor quality job on the few tasks she does (shrinks his medical compression socks in the dryer, spills bleach on his colored clothes etc...) and we basically have taken everything off her "list" that is in the least bit difficult. You would be shocked if I listed some of her personal issues, which she should never have shared with my father....

Of course, I want to fire her. But my Dad "likes" her, even though he complains about her.... and if I fire her my father wont let me hire anyone else.

You gotta laugh, at some point.

I would much rather hire someone myself, privately, screen them and pay them well if they do a good job. But the work that goes into finding/screening/hiring/keeping these workers is too much. I worry about liability too, taxes etc..

My 4 hour a week of "help", has definitely cost more time and tears then it is worth.

[Briolat21]

I want to commiserate on your aide issues!!! But I don't want to take this thread too off track.

Maybe at some point I'll start a HHA thread (the good, the bad, the ugly).

But until then .. my lasting thought is that people who are in need of care/help/companionship -- generally make crappy employers.

My parents too are "too nice". That's why it falls to me to manage everything.

Glad you could at least vent about your situation here to us. Personally, I don't like the in-person support groups (and most of the support groups here are designed for elderly folk caring for a spouse, not a "young" person caring for parents) - they can be VERY depressing. But glad that we're at least able to give you a little sense that you're not totally alone, or rather - that you're not the only person having to deal with this.

Just that can make you feel better.

best to you!

[cremebrulee]

Originally Posted by sfcambridge

Caregiving has come to me at a younger age then most. My parents were still healthy and working when catastrophic injuries/illness suddenly hit in their 60's. My life has been on hold ever since, taking care of them.

My father suffered horrific injuries after being hit by a taxi. Within a few years, his issues began to stabilize with severe disability, and then my mother suddenly was struck with widely spread cancer. Another horrific year+ of fighting/chemo/illness before she passed away. My father declined more in this setting.

None of my friends have lost a parent. None of my friends have a disabled parent. None of my friends are caregivers for a parent.

How is this possible? How can I be the only one?

It is very isolating. Nevermind the fact that my life centers around my father's appointments and care, that I have moved to my parents' community away from my own ..... But I have also become a freak outsider in my circle of friends.

No one understands. In fact, I sense that people run from me in fear, as the tragedies in my family remind people that no one is safe, and everything can change in an instant.

It is quite cruel. To lose your family, and then lose your friends in this way.

I have started to have a hard time relating to people... ."normal" people.... people who are still ignorant about what the future may hold for most of us. Their concerns/worries seem so insignificant.

At times I know what they are thinking.... "Can't you just put them in a home? What are you doing?!?!" ... Some will say it out loud, others will hint it. People can be a little cold and "objective" when they aren't talking about their own family.

But this just shows their own ignorance.... of what they would want for their own parents.... of affordable options... of how poor care is EVEN if you can afford to pay for it.

So I have stopped talking to them. They don't want to hear about it, so if they ask... everything is "fine". But they really don't call anymore anyway.

You are not the only one. I took care of my foster mom for years, and it is difficult, especially when the sibblings do nothing to help. But, my foster mom, pretty much allowed them their own lives, while they were growing up...she hated to disapline. So, I pretty much put my life on hold, and it seemed everytime I planned a getaway, she'd get sick...and yes, people can be so cold.

You sometimes as a caregiver come to resent putting your life on hold, however, I also tried everytime that feeling washed over me, to remember that my mother put her life on hold for all of us...and we came first...she came last.
If your looking for sympathy or for permission to feel as you feel, forget it, b/c unless someone has been through it, they are not going to understand.

I have wonderful Neighbors whom I love dearly. They are all retired, I work full time, and have MS. Also, I can't stand being smothered. Some of these girls, for some reason have a need to bond with me constantly? I know the one is a caregiver herself and needs to get out...others are retired and forget what it was like to work full time, and they actually invade my privacy and personal time. When I try to explain to them that I need my privacy and personal time, they don't get it, and refuse to allow me that, so believe me, I understand.
And if you tell them nicely, they're feelings get hurt or they get angry?????? So....what can I say...being a care giver is tough, but being a mom is also tough, and I put my life on hold as a choice...b/c she had given so much to me...and now, even after she is gone, I miss her and remember and realize, just how much she gave up for me.

I don't know if any of this helps you...but, just saying.

And my family didn't believe in putting someone in a home...they are my parents, and there is no way, unless it would have gotten to the point that I just couldn't do it any longer. And I'm not downing anyone who does put their parents in a home, believe me it is one tough decission which always leaves guilt.

[Amelorn]

I dealt with this issue when my mother sickened (diagnosis April 2011) and died (early Sept 2011) with uterine cancer. My time was for all intents and purposes bounded in Summer by Memorial Day and Labor day.

At the time, I was 21. The contemporary world of my friends were summer internships, girlfriend trivialities, angst about the upcoming senior year ad job market, and so on.

I hated when my cousins (my generation in their 20s) would come over and engage me with pleasantries and nothings. Mom was dying in the next room, I was emotionally and physically exhausted, and my time was wasted with discussions of others charmed lives.

Occasionally, I'd get an invite to go out. I truly relished those.

Friends were a mixed bag. Some called/invited me out, and others were avoidant. All of my relationships with friends returned to normality after mom died, and I rebuilt my life. I never took issue with that, as in all honesty, I don't know if I could've done something useful were all roles reversed. On the other hand, if a friend suffered a similar misfortune, I know now that I'd be at his side with a full complement of useful advice and assistance. In retrospect, my situation was "easier" as cancer has a clearly defined outcome, death or remission, with this cancer being particularly rapid. My neighbor's husband was a quadriplegic dependent on her for years before he deteriorated and died.