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teristeve Asked April 2010

How do you care for yourself emotionally, mentally and physically, while providing good care for two mentally challenged elderly people?

I really thought my husband and I were capable and prepared for this experience. We gave up our home, sold and gave away 42 years of belongings and furniture. We are paying an additional $82 a month for a storage unit so we did not have to give up everything. This is such a thankless job and all the in-laws do is complain and gripe about this and that. We are beginning to feel resentful and I really don't want that but where can we turn. We are doing our best but need some advice and suggestions for dealing with 2 (alzheimers and dementia).

195Austin May 2010
I myself think it is time for them to be placed and do not wait for someone else to reccomand it no one will because you are doing it and hints about how hard if is for you we had people visiting the husband and I was so tired from no sleep and being treated badly I actually put my head down on the table and NO ONE NOTICED. When I finally after 16 yrs said I could no longer take care of him by myself and to be honest he did not deserve my devotion every one said you are right.

AlzCaregiver May 2010
Tough...once the Public Guardian screwed up Mom's finances really big time, and she was "out of money." She called up and said "We're putting your mother in a nursing home, so..." LIKE HELL! I rose up like the HULK, and within an hour sorted everything out that they'd taken months to screw up. The PG keeps financial things from the family and caregiver to help prevent more financial abuse.

Looks like you'll have to lay down the law as far as your father firing helpers. It might be illegal to "threaten" to put him in a facility, but that talk should probably happen. Shape up or ship out. Perhaps you can take him on a tour so he can choose which ones look promising. Be sure to point out all the zombies drooling in their wheelchaisr, staring aimlessly from their beds. "Those are the people who are uncooperative, drugged into behaving."

I can only think to when I get to this point. I will be hard to deal with. But having no family, I won't get the choice of family caregiver. It'll be "The Poorhouse" for little old me.

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Liam May 2010
AlzCaregiver....You're TOUGHER than I am! VERY good advice! I attempted to do exactly what you suggested...right down to considering camping in the back yard.

We hired another set of eyes in their house just to give me and my wife a couple hours break to NOT think about them. Everyone I brought in, they fired...My father would tell me about firing the person with a slight evil smirk on his face. There is a point in there where they begin to fight everything you try to do for them...when it reaches that point...when they are working you to death and fighting you every time you try to hire someone to give YOU a break...its time for assisted living or a nursing home...In my opinion. Most of us feel a sense of duty to our parents, and putting them into a nursing home is the absolute last thing we want to do. But many times, its either put them in a nursing home or ruin your own health, marriage and life.

You are correct about getting help in the home if one of the persons is a veteran. The VA can provide Housekeeper and/or Home Health Aid at no cost to the Veteran...Housekeeper and/or Home Health Aid that is at no cost to the Veteran is for the Veteran ONLY...The VA will hire someone to visit the veterans home up to two hours per day, five days per week to do light housekeeping, e.g. vacuuming dusting, cleaning bathrooms and kitchens, cooking, laundry, bedding change etc in the areas of the house in which the veteran lives and functions only. They will also help the veteran with personal care needs...e.g...bathing, dressing, eating, etc...see Veterans Handbook VHA 1140.6 for a better explanation of benefits. Of course, Medicare provides the same benefits. If the veteran is at poverty level, he or she can obtain a veterans pension as well as "Aid and Attendance". There's a list of other VA Handbooks explaining other benefits to veterans...check on line for "Veterans Benefits" to view them all.

If the Veteran is a "Disabled Veteran", the VA will provide some monetary compensation for these services for the veterans spouse. It's not much, but every little bit helps.

AlzCaregiver May 2010
search this site for this article
VA Financial Assistance for Caregivers

this has info, and there are other related articles as well. I think it is $1500 month. This should offer you some serious time off and direct help.

Also, there is a provision for income tax for deducting expenses of costs associated with elder care. Some of us don't have any income, but since you are working, this would be of benefit. I think if you chip away at several aspects of this, you will find some breathing room.

Keep on truckin!

mstexas May 2010
I agree with all of the above Its been 7 yrs, we also thought it was going to be a 6mos to 1yr, but Mom will be 90(thinks she is 60) and the mother in law grandma will also be 90 in may. I sometimes feel resentment then i go outside and just BREATHE!!!!! I talk to myself ALOT and remind me that I signed on for this and when it comes time I will be strong enough to place them in a home. Thank god for my husband and children they keep me SANE but we all pitch in.

teristeve May 2010
I WOULD LOVE TO GO TO A SUPPORT GROUP, BUT I CANNOT GO ANYWHERE AT THIS TIME WITHOUT SOMEONE TO STAY WITH THEM. MY HUSBAND AND I BOTH NEED TIME AWAY JUST TO DO THE ERRANDS. WE ARE BOTH GETTING COUNSELLING ONCE A MONTH THROUGH OUR WORK. BY THAT TIME I JUST FEEL LIKE GOING THERE TO CRY AND SOMETIMES I DO.
ALL OF THE WELL WISHERS HELPED ME A LOT BUT I STILL NEED PRACTICAL SOLUTIONS AND AM STILL TRYING TO FIND OUT ABOUT THE VA BENEFITS FOR RESPIT CARE,ETC.
ANYONE OUT THERE KNOW ANYTHING ABOUT THIS OR ANY OTHER FUNDS TO HELP PAY FOR CAREGIVERS TIME AND EXPENSES??? NEED HELP QUICK!!

THANKS TO ALL OF YOU AND I PRAY FOR ALL YOUR EFFORTS WITH YOUR LOVED ONES AND KEEP SENDING THE COMIC RELIEF!

hapfra Apr 2010
Just checking back, and you have some good ideas by others---I also want to ad there is a book out "caring for yourself while caring for you aging parents" and the author is Claire Berman . If possible try to get involved in a support group-as this can open some windows of ideas-how other people handle a similiar-and difficult situation-This forum-as well as what there might be out in your area, may be the way to get a handle on things.
Hap!

Moberg Apr 2010
AlzCaregiver - some great ideas there - thanks! My brother is the other caregiver for our Mother, although I live with her, but at least he helps. But a teenager coming in would be a wonderful idea as we can't really afford much else. There are plenty of small jobs that I never seem to be able to tackle so this would solve two purposes. Whoopee!

AlzCaregiver Apr 2010
If you start to poke around this forum, you will find posts about all these studies about how stressful caregiving is...and what is at the end of this study? Suggestions that caregivers join a support group or send for brochure. or that employers should allow workers time off without penalty. In short, there IS no real help directed at the caregiver. There is help sometimes directed at the recipient, however, bypassing the actual needs of the overburdened and burnt out caregivers. You will find that OUT THERE, as crucial as we are in the whole cog of life and keeping our parents alive, when we burn out, we are tossed out and those needing care transferred to a care facility or a hired caregiver brought in. I will literally be out in the gutter when Mom has to be put in a nursing home, with years of no SS and so forth.

What my point was going to be WAS, you may not be able to find suitable respite caregiver for your parents directly. They may resent it and kick up a fuss. However, you can easily hire some teenager to do chores for YOU and your husband. If another pair of eyes is puttering around the house, it frees your consciousness from always being 24/7 on guard of the elders. You can escape to water the garden outside, and the helper can easily come get you if trouble is brewing.

Also, an outsider gives the parents an escape hatch to vent. It really helped when Mom started to go to her daycare center. She made her own friends, throws kisses, holds hands with the old guys, etc.

I'll bet they want to get away from you as much as you do from them. Cabin fever. Once before I had to sleep literally beside Mom's bed on the couch, I thought I would put a cot out in the backyard, just so I could camp out occasionally and feel the cool night air and hear the wind in the trees. If you have a yard, you might want to pitch a tent out there and create a space for yourself...one of you on duty, the other in the escape hatch watching tv with earphones, reading, taking a snooze. Get a massage chair pad, massage unit for feet, etc.

Also, get these things for your parents. There are simple "over the top" kindnesses you can offer them that once set up, are easy to offer. When the whole resentment thing kicks in, I tend to want to make Mom suffer as much as I am.

Oh, if your father is a Vet, then there are funds available to pay for respite caregiver, and the $ amt is increased for spouse too. There is a lot of paperwork involved, and I believe that the caregiver has to be licensed. This could be a key element in keeping you both sane.

hapfra Apr 2010
Hi-It sounds to me that both you and your husband are about on 'caregiver burnout' and modt understanably. Taking care of a parent or both parents is a very demanding situation-especially when dementia or AD is involved. I was a caregiver myslef-and have an idea what it is like.
I guess you need to explore your options-such as day care, or perhaps even assisted living (in a secured unit) and most important---DO NOT forget about your own health.
Best~
Hap

AlzCaregiver Apr 2010
I often wonder how much some sort of "therapy" (aimed at the parents) would do for this situation to get the parents to stop being total jerks. What would Supernanny do? Of course, with a kid, it HAS to be that the parent is alpha dog, but your husband's parents have been alpha dog for too long.

Back to "therapy," wonder if an intervention is in order? If the parents are cognizant enough to gripe about specifics, then perhaps they could be with it enough to have an outsider therapist lay down the new laws. They WILL respect you, they WILL respect that you have pulled up all roots to help them. They will say PLEASE and THANK YOU and so forth.

Well, maybe this is wishful thinking. I'll bet the problems stem from the fact that they are now prisoners in their own home. And they have each other to plot with, ganging up on you and your husband.

I arrived here at Mom's, giving up everything as well, thinking it was a 3-6 month gig, she was in that bad shape. I got her better...still going strong 8 years later.

Liam Apr 2010
Ask your parents Doctors to prescribe a nursing home or assisted living care for them. Use their insurance, Medicare or Medicaid. This situation will wear on you and your spouses health and marriage. If your in-laws and other relatives dont like how you are caring for your parents, ask them to take over so you can have your life back.

It is near impossible for only two people to provide 24 hour care. You're going to kill yourself trying

cspoulsen Apr 2010
Please contact medicaire to get help with cleaning and bathing.

Also, check to see if you have a community resource where you can get free respit care for both members. This will give you and your husband much needed time off. Once you get some proper rest, come up with a schedule where one caretaker is "on duty" and the other gets to do something fun...even if just for an hour or so.
This works for my sister and I as we have a 97 year old alzheimer mother. Most of all remember to say your prayers and ask God to give you wisdom and strength. God Bless you both for having such loving and well intentioned hearts.

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