Care giving is Living Hell...comments?

robarAugust 2, 2013

That is my opinion from being involved in giving care to an elderly parent right now. I know some people won't agree with me, but my opinion stands.....it's living hell! I welcome all comments.

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CA Kate

Only if you let it be. It really helps to find a professional caretakering company to provide you some relief on a daily basis. I can't begin to tell you what a difference it has made to my quality of life.

    Bookmark   August 2, 2013 at 7:29PM
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emma

My husband had AZ and I cared for him for 4 years 24/7. Under the circumstances we were very lucky. He forgot I was his wife, but he knew I was the one he loved and who loved him. I could leave him at home to run errands as long as I did not stay past 3 PM, then sun downers would kick in. He didn't know up from down then. I eventually I put him in a home because stress was causing me to have events in the brain which I was told could kill me. I had the stress because I knew my life was over just as his was. Having him in a care home was worse in some ways because he was a fighter. The stress was lessened because it was not a 24/7 thing.

    Bookmark   August 3, 2013 at 10:55AM
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carrie630

robar - you don't have to answer this, but are you a "paid" caregiver for your parent? Did you know that there is such a set up in certain states? Not sure which one... but it is worth looking into...

Carrie

    Bookmark   August 3, 2013 at 4:05PM
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jkom51

Yes, it's very stressful. And I say that even though my MIL is a very sweet, polite, lovely person. But her dementia has greatly increased her fearfulness, anxiety, and stubbornness - making so many things a battleground.

Bathing, dressing, eating, taking pills, socializing - some days she can remember things, but more and more often things slip by her if we don't remind her.

Then, of course, we're "nagging" and "being unreasonable".

Sigh. We are in the process of putting her in a senior care facility. We had hoped to keep her at home with us a few more years, but she needs the socialization and reassurance (e.g., knowing somebody is always around 24/7) that a senior facility can provide, which we cannot.

Well, not without giving up our lives entirely, and that is soooo not going to happen!

    Bookmark   August 3, 2013 at 8:54PM
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sunnyca_gw

Robar, If you gave us idea what you mean, you might get some help! Is the problem the person is sweet but you have to do everything for them. Or Angry parent, strong & mean, throws things, knows it all, doesn't want you around, has no problem but you! See what I mean? Some people are more than 1 person can deal with I don't care how many caretakers come & go(& they would if person was difficult) Friend's mom had been sweet lady & survived breast cancer twice to go on & raise her kids. Then in her 70's got mean & kicked out of nursing homes(never swore in her life & proud of it suddenly swore at everyone. Daughter finally got her in small nursing home provided she spent all day with her mom & they would medicate her at night. She lived couple of yrs that way before she died. Daughter had 2 teens & hubby at home so it was a rough 2 yrs. So don't beat yourself up if you can't handle it.

    Bookmark   August 6, 2013 at 2:07PM
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carrie630

..... how does a nursing home kick someone out? Do you mean a paid facility or a Medicaid Nursing Home?

I would think if the person was indigent and in a Medicaid facility, they would take care of the problem themselves... I know nothing about how they work, but to get kicked out of a nursing home sounds strange to me.

Thanks for any answers

Carrie

    Bookmark   August 6, 2013 at 5:24PM
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emma

They can kick you out if the patient requires so much help it takes away from other patients and of course from the homes profits. It is against the law to kick you out after they evaluate and accept you, but there are loop holes in every law. In this case all they have to do is take you to the hospital, then they don't have to take you back. It doesn't matter if you are on medicaid or paying your own way.

    Bookmark   August 6, 2013 at 7:41PM
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carrie630

so if the person is in the nursing home (medicaid) and has NO money and they kick them out - what happens to them? This is confusing to me.... thanks

Carrie

    Bookmark   August 7, 2013 at 3:43PM
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emma

I don't know for sure in that case, but in my husband's case he was a fighter and after he was hospitalized he was place in restraints, no home would take him. I asked the rep that was suppose to find a home for him what would happen if no home would take him and he said he would just stay here in the hospital.

    Bookmark   August 7, 2013 at 6:37PM
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raee_gw

Carrie, no facility wants a patient that might injure another resident or staff (staff get injured in this line of work often enough as it is!) That is why they would contrive a reason to send someone to the hospital and not take them back. Someone who insists on smoking in bed or around oxygen is another type that will get the same treatment.

At my hospital, in a case like EmmaR's husband, we would have a behavioral health specialist adjusting his medications until he did not need restraints. It is a rare case where they can't hit on the right combination of medications. I don't necessarily mean kept sedated -- hate to see people sedated all the time, but leaving someone in an aggressive, angry mental state is just as cruel. Then we can work on finding another facility to take him.

A little off topic but -- We did have a case recently of an aggressive, volatile brain injured patient, a young man, who was very very very difficult to place; we ended up getting him into a specialized facility several states away. We did hear back a few months later that he had improved greatly. Being difficult to place probably worked in his favor because otherwise his parents wouldn't have considered the far-away specialty center and he might not have gotten the treatment that worked for him.

    Bookmark   August 12, 2013 at 4:08PM
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emma

My husband fought when they asked him to leave another patients room, or when they change his depends. I am assuming he thought he was at home and could go into any room he wanted to. When he was living with me it became his nightly routine to go through the drawers in the bedroom. I suppose it was interesting to see what they contained and of course the next night the routine would be repeated because he didn't remember what was in them. The excuse for them to send him to the hospital was to get him on drugs that would change his behavior.

Before I put him in a care home I wrote a letter for his care givers telling a little about him and his quirks. I told them he does not like to be called by his name, so if he is a problem call him honey. I had a couple of people say they can't do that it was against the law. When he was running around in his under wear and laid down on someone else bed he wouldn't get up. One of the girls remember my letter so she said "Honey let me help you get dress". He followed her like a lamb. My guess is that he thought it was me.

    Bookmark   August 12, 2013 at 4:24PM
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raee_gw

EmmaR, it is not against the law (at least not in my state) but the facility may have had a rule against it--many people think that addressing someone as honey, dear, darlin' etc is demeaning or insulting. BUT since you had explicitly told them to do this, they should have! I am glad that someone remembered.

My mother started to fight, too, only with bathing. For some reason that set her off -- she slapped me a few times when I was cleaning and filing her nails. Fortunately the medication did help in her case.

    Bookmark   August 13, 2013 at 7:50PM
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carrie630

Thank you, raee....now I understand. :0)

Carrie

    Bookmark   August 13, 2013 at 9:42PM
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wireweiners

Yes it is a living hell. We do have paid help that comes in to stay with my father from 9-4 weekdays but after 4 and on weekends its me. I work full time and then go home to take care of dad, cook an evening meal, do laundry, clean kitchen, give him his evening meds and put him to bed. Plus I have horses, dogs, cats and a teenage daughter to take care of. It's like having a second job. Weekends, I'm stuck at home with Dad, maybe I can leave him for a few hours to do shopping, but that's it. I can't sleep in on weekends because I have to be down at Dad's house to get him up, give him his shower, meds, breakfast, etc.

I hate being a caregiver. I hate changing his urine soaked diapers, I hate the constant smell of urine, I hate having to wash his urine soaked clothes and bedding. I hate giving him a shower and dressing him. Because he and my mother refused to do any advanced planning, a nursing home is out of the question. He has too much property to qualify for Medicaid and not enough money to do private pay for a nursing home. I have lived on property owned by my parents for the past 20+ years and have helped them all that time. They were supposed to deed the piece of land that I live on to me in return for the work that I did on the place but they didn't do it. Now its too late, Medicaid goes back 5 years. I was a fool to buy a mobile home and put it on that land without having a deed. I realize that now but I wanted to live in the country and I thought I could trust my parents. Hah! My mother is dead but I resent her and my dad.

I have 2 siblings, a brother and sister, both younger. My brother lives with my dad but does very little to help with him. He will occasionally help put him to bed or get him up in the mornings but that is it. He has a girlfriend that he met on line and goes off on weekends to be with her. My sister lives 80 miles away and comes over a couple of times a month for a few hours and then leaves. She was supposed to come over for a long weekend a few weeks ago and look after dad while my daughter and I took a short vacation. What does she do? She takes him camping! So when I get back from my vacation I have a ton of dirty laundry and an exhausted 85 year old to deal with. The camping trip made his CHF worse and I have to deal with it. She went behind my back and got POA but she's never here to deal with anything. My dad owes taxes on the sale of his farm. I tried to work with his attorney and his accountant to get them paid. That was when sister got POA because I "was trying to take over". The taxes haven't been paid and interest and penalties are accruing. My sister does nothing but she's quick to criticize what I do. I am "mean" because I don't consult my early stage dementia father about every little thing. I make decisions and do what needs to be done. I don't have the time nor the energy to ask him if he wants to get rid of the soiled sofa.

So yes, caregiving is a living hell. God help me, but when my father dies, I won't be sad. I'll be glad because I will have my life back and I will never have to see my b-word of a sister again.

    Bookmark   August 20, 2013 at 12:40PM
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CA Kate

I understand your anger... I've been there. I don't know what your religious beliefs are, but I pray everyday/night for HELP! The help comes: patience -- by the armload, courage, understanding, wisdom, and much more.

Can you or your Dad afford caretakers 24/7? You need more help than your family is willing to give you, so you need to get it elsewhere. You are doing too much; you are too tired; you are exhausted; and you are angry. Do you have Hospice in your town/area? If so, give them a call to see if they can help.

    Bookmark   August 20, 2013 at 10:35PM
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Houseofsticks

I wish I could bottle and send strength your way. I understand the stress. Know that what your doing is powerful and important.

    Bookmark   August 21, 2013 at 1:47PM
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sunnyca_gw

wireweiners, some of your dad's property should be sold & your dad put in a rest home. Must be someone that can force your sister to sell some of his property. His property is his money to take care of him so see to it that it does. I don't know who you go to for that but lawyer that could force the sale. Medicare probably knows who to contact.

    Bookmark   August 22, 2013 at 1:12AM
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raee_gw

Wireweiners, did she get POA signed after his dementia started? Perhaps you can apply to the court to have it set aside, if you can show that he was not competent and you are taking responsibility and she is not?

Does your county have a council on aging or similar senior services agency? Most do, they are federally funded. They should be able to help.

Or, if he is still so early that, as one attorney told me, he knows "right from wrong and black from white" he could sign another POA in your favor with witnesses who are disinterested. (Something that I was advised to do when my financial POA brother was not getting things taken care of)

Or, perhaps you could hire live in help in exchange for room& board and a living allowance? With your brother there to sort of supervise, this might be a good way to go. Sort of like a nanny.

Good luck to you.

    Bookmark   September 11, 2013 at 5:31PM
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