Care givers check in

[Uben]

I find myself in the position of care-giver for both of my parents and now, my brother. Mom has rheumatoid arthritis and serious back problems. She is in a wheelchair now. My step-dad has diabetes, a pacemaker, recovering from prostate cancer surgery and now has detached retinas in both eyes. My brother has injured his back and is trying to get well enough to return to work, but there seems to be a more serious underlying problem...maybe bulging disks.
They all have pretty good insurance and are financially well off enough to pay for their treatments. The problem is transportation, none of them are able to drive at this time. I am the only one they have to call when they need to go somewhere or need something, and I don't even live in the same town, but do live nearby.
This is really just a thread for me to vent, but I am sure there are others here in my position to some extent. My wife died last year of breast cancer, and of course, I was her care-giver till the end.

I am 58, retired, and pretty well off financially. I am glad I have the ability ot help my family in their time of need. They were always there if I needed them growing up. Fortunately, I never did, but had I found myself in their current positions, I have no doubt they would all be there for me. So.....

Trying to coordinate appointments so I can get them all to their respective doctors is a nightmare. My brother's problems are hopefully temporary, but mom and my step-dad's ailments will persist till they die, and probably get worse. And when one of them dies, I will be faced with what to do with the other. Mom is 79 and step-dad is 82.

I'm not looking for sympathy...don't need it. I'll be just fine, just feeling overwhelmed right now. I have a large remodel project in the works on my home, but I feel I might need to postpone it until things get a little less hectic. More stress!

I didn't find a "care-givers" forum, so I posted this in GD. I was wondering if any of my fellow DUers find themselves in this position? If you do, here's a thread to talk about it. Use it! I think by sharing stories, maybe we can manage to help each other, or maybe just release a little of that stress that plagues us. I have utilized our wonderful cancer and bereavement forums here at DU. They helped me through my wife's struggle and eventual death. There are wonderful folks there.

[elleng]

1. I'm not in that position,

but husband just passed (timing unexpected,) and I was helping get him to/from hospital etc. Not a problem.

My suggestion: Take care of yourself, and (maybe premature.) Make 'final plans' for them soon, now if you can. If you're the only one likely to do so, that's burdensome enough, and if you're NOT the only one to do so, you may need to or want to consult/negotiate with others. Try to do as much of this planning early as you can. jmho.

Best

[Newest Reality]

2. Yes.

In fact, it is how I survive right now. I'm taking care of someone else's Father in exchange for a room to live in, so it is almost like taking care of one's parent since it is not a paying position, but not.

After a full year, I have had to make many adjustments while acclimatizing to senior care-giving. At this point, I do seem to have it down. My only real frustration is that it is 24/7 and totally consumes my time without any compensation, so I am unable to "get away" and/or do/buy things. It beats being homeless.

While care-giving of this kind is actually a skill, (as you find out physically and psychologically) and filled with challenges and frustrations, (especially if your charge deteriorates over time, which is more usual) I both empathize with you and encourage you to connect with and talk with others about your experience and YOUR needs.

You need some care, too. Keep that in mind. Find out what you need to and do what you can to deal with the very quick tendency to burn-out on this. I am alright with being unable to socialize or have any activities that involve money, but most people are not in that boat and so, those activities are recommended.

Oh, and fortunately, my Senior is not too bad off health-wise, yet, and part of my efforts is to keep it that way by various means. It is a full time job and does offer the chance to practice compassion and develop more empathy for others and yourself. That's good.

[Kurovski]

3. K&R

I like to see shared stories of people stepping-up and doing right by their families. It's motivational as well as an inspiration.

Sometimes just telling your story can be enough. Putting it in writing, having others read it.

I've had very limited and fairly easy experiences. Nothing very challenging as of yet.

[a la izquierda]

4. I'm not a care giver

But my mom is, and I help when I'm home. My grandma has an odd form of dementia. Confusion, hallucinations, etc. my grandma refuses to go into a nursing home, even though the family can afford it.

I'm scared to death for my mom...

[Arcanetrance]

5. I took care of my father 24/7 after a major stroke

Hes recovered now but still needs my help with alot he can't cook for himself and still has issues walking. But its helped repair the damaged relationship we had

[marybourg]

6. I'm sorry for all of your burdens.

I'm a caregiver too. As a New Yorker transplanted west, I've noticed that many people in my new home-land don't think of looking for paid help when they can afford it. Have you looked around to see whether another older person in your parents' neighborhood who perhaps has more time than money might ferry them to some appointments for a small honorarium plus expenses ? Another possibility is a home health aide from a non-medical agency who will drive them to appointments and possibly provide some home help, which it certainly sounds like they need. Where I live, such help costs $20/hour with a min. of 2 hours. It may be different where you live, of course. Good wishes.

[TrogL]

7. Craftygal is on peritoneal dialysis with a home machine

I get to lug boxes of fluid and supplies up and down stairs, disconnect the old bags, sometimes hook up the new bags and generally do anything else around the house that requires bending over.

[NYC_SKP]

8. My Step-Dad passed in February, Mom's service is this Sunday, ask me anything.

Not to make light of this.

I'm just a tad younger than you and have been taking care of my parents with increasing difficulty since 2008 when my dad developed severe dementia. Longer, if you include taking care of their house repairs and other matters.

If they have any funds, or if you can help, please consider hiring help. We went through all sorts of help, some of whom were outright thieves, but finally found several good candidates through a Craigslist ad.

Mom needed round the clock help and it was found for $3,000/month- a lot for many people but half the cost of room and board in a care facility.

The helpers took care of meals and housework and medical appointments and medications, I had been doing appointments and meds 5 and 6 years ago and it was killing me as I was working full-time.

I hope this helps and I hope you can make the most of the remaining years.

[Habibi]

9. See if your county has a Department of Aging.

Many counties do, and they offer caregiver resources. Are you the sole family member involved in care? Do your parents/brother have friends who can help with transportation and other ADL (activities of daily living) needs? Can they afford to hire some help? Perhaps another retired family member or friend who would appreciate a little extra money, or a professional agency?

As others have said, you need to care for yourself first. If you run yourself ragged trying to be Superman, you *will* burn out and be very little use to anyone. Start marshaling resources now.

Best of luck to you! You are fortunate that you seem not to resent the position you're in--there are many caregivers out there being forced to care for abusive parents, and they are losing their own health, financial security, and sanity.

[Safetykitten]

10. You are in a tough spot...

For four years I took care of my mom and dad, then my mom till she died three years later. The hardest part is the coordination of all the appointments with the specialists and the primary. I got them to go to the same doctor and he would see them together and then get the specialists to see them together if that was the case, but this was rare.

Getting a larger car that can take two wheelchairs and two walkers is good also.

It's ok to feel overwhelmed, because you will be. That is a lot to do. Take the breaks you need. I did not do that for the first couple of years, then I realized it's not good to not take sanity breaks.

They both lived with me, as I worked out of my house, and it was a grinding non-stop job. Shopping for food, preparing food, diapering, cleaning, and while I was doing my own work was extremely tough.

The biggest things will be the appointments and the time they take with two people that need to be seen, and the subsequent specialist visits. I would take the whole day, and it would.

[IdaBriggs]

11. Not a care giver; some things care givers need to remember --

1) "Care giving" can vary from "needs a lift to the doctor" to "needs someone to *sit* in the doctor's appointment to remember/remind/ask questions/discuss medications". Communicating the expectations with everyone involved in the decision making is essential (including the person who may resent losing some of their independence); for example, medications need to be written down (in case someone else has to take a turn going to the doctor while you are at a dentist, etc.), issues with eating, memory or weight should be recorded, and "house rules" need to discussed -- is a caregiver expected to mow the lawn, due basic household maintenance, pet upkeep (including trips to the vet), wash dishes, prepare meals/menu plans, grocery shop, and administer medical aid? Or are they just "there" in case someone falls down/needs an ambulance called?

2) When someone "isn't working" (per other family members) because they are "taking care of someone", family issues can regularly occur when those with regular 9-5 jobs question "who is taking care of who" -- and this needs to be discussed. While someone is staying home taking care of someone else, that means they are NOT out earning money in a "real" job, which means their current income AND long term retirement is being impacted. Also, if it doesn't "look like much work", the 9-5 folks might forget that the caregivers need breaks (and weekends off), too.

3) If your living arrangements are dependent on the person you are taking care of, you will need to have a plan in place if your patient's health deteriorates such that they require hospitalization, move to a nursing home, or sadly, when / if they pass. Not to minimize the emotions associated with "job loss", this type is usually worse, especially if there was a strong emotional bond, and plans should be made for grieving, as well as "what happens next" career wise.

4) If you are living with the person you are caring for in your "own" room in "their" house, what rights do you have as a "roommate" versus "employee"? Do you have scheduled time off? Are you allowed to have guests? Overnight guests? What about alcohol use or "recreational" drugs? Etc.

5) What are the financial arrangements? Who is monitoring the situation to make sure no one is pilfering funds or behaving in a non-responsible manner? If there are family harmony issues when it comes to money (and there usually are -- sigh!), who is making sure that the bills are paid - and if someone is doing this as a full time job, how much are they being compensated so they can buy personal necessities?

I have watched many families have issues when an "adult low functioning family member" was supposed to be a caregiver, but the rest of the family was convinced they were simply taking advantage of an elderly parent/grandparent. I have also watched family members step up and do whatever it took to make someone's final years pleasant and peaceful. The key is *always* communication and respect. If you aren't getting it, I *highly* recommend taking a one-week vacation and leaving the "non-respectful" person in charge so they can learn to understand the condition of the moccasins you are wearing.

Caregiving is like parenting; it is a lot of work, not always appreciated, but vitally necessary.

I salute you - thank you!!!

[Kookaburra]

12. Taking care of my mother who has dementia

Up until a year ago, I was caring for her and my disabled brother, but he has since had to go into a nursing home, although I'm still his "responsible" party, so in truth I still care for him as well.

It's a thankless job from there is no rest. We don't get days off, sick days, holidays. Nothing. We work 24 hours a day 7 days a week 52 weeks a year. Of course you're exhausted. Plus the stress of being a non-medical care giver for people with severe illnesses or disabilities is an exhaustion in and of itself.

You are blessed that you have the financial means to take care of them and yourself. We rarely make it to the end of the month on the tiny bit of $$ my mother gets from SS, and now we're going to lose the house and don't have a place to go yet.

The world is a crappy place intent on punishing us for doing the right thing.

[hrmjustin]

13. Recently taking care of my mother because of her surgeries but she is improving.

[Butterbean]

14. I am on the cusp of becoming an official member of the sandwich generation.

I have 2 young children, one with special needs. My father has parkinson's and lewy body dementia, and my mother is in heavy heavy HEAVY denial about it and is refusing to care for him appropriately. Everything is falling to my shoulders, because they are estranged from my older sister.

I just finished reading the book "Making Rounds With Oscar," and it was very helpful for me.

[Ms. Toad]

18. Not sure what to call it -

But beyond sandwich for me.

Chronically ill daughter (will need a liver transplant someday & will steadily decline until then), spouse with some form of dementia (fortunately not progressing rapidly - but on two alzheimenr's medications despite being in denial that anything is wrong (so we periodically do job searches and can't yet do any financial planning), aging parents (fortunately in relatively good health - and in a full service retirement community, but occasionally I get pressed into service, like mom's recent (2nd) mastectomy for breast cancer) - and I have acquired a (likely) chronic case of vertigo myself.

Oh joy.

[malokvale77]

15. I'm a home healthcare attendant for work...

and a caregiver for SO and brother at home. 24/7, it's not easy.

[Le Taz Hot]

16. I take care of my 91-year-old

Great Aunt whom I love so very much. She took me in when nobody else wanted me time and again as a child and I feel privileged to be in a position to now take care of her. It does get frustrating sometimes because they have their bad days and they have their good days but you take the good with the bad and just do the best you can.

[Nay]

17. First, I would make sure that your parents have their wills and DNR wishes written

down, signed, etc., and recorded with their doctors/hospitals, if you haven't done that already. Ditto on the papers giving you legal rights to decide things in end-of-life situations. If your parents have the financial means to go into an assisted-living or nursing home, have you talked with them or taken them around to some nice places so they can maybe get used to the idea?

Just for day-to-day help, is it possible for them to occasionally take a cab or a senior-care bus to doctor appts.? Or, as others have mentioned, can they pay a trusted neighbor to take them sometimes?

[Uben]

19. Thank you all for the great suggestions!

I don't do this because I "have" to, rather I do it because I want to. I know I won't have them much longer and I enjoy being able to spend this time with them. There are services available for help, but I feel the need to do this for them because I love them and am the only family member available to do so.
Just got back from a 5 1/2 trip to the docs, another at 11:15 tomorrow, 10:00 on Friday, and another on Monday morning. Sometimes it's just once a week, so I do get breaks on occasion.

It is a tiring job sometimes, but I can handle it. If it gets to where I can't, I'll hire some help.

Lots of good people here! We take care of family first and that's as it should be, if possible.

To all of you caregivers...God bless you all. Karma's gonna make it around your way some day, and she'll be smilin!