I give up

jannieMay 25, 2012

I'm the "wellspouse" caregiver for my 65 year old husband, who has a triple whammy:Multile sclerosis, Seizures, and Alzhymer's like symptoms. Add depression to the mix. He is or was a highly intelligent man, had worked in a pretty high position in the County government before retiring due to the MS. He was also quite an athlete (softball, volleyball,running) and a great husband and all-around fix it guy. Me, I have kidney failure and just got a tramnsplant in January. I take care of him the best I can, but he's now basically confned to bed. He wears diapers, watches TV all day. HIs only interaction with anyone other than myself is when the Aide we hired comes three afternoons a week. She gets him out of bed, into a wheelchair, helps him shower, shave, brush teeth, and dress. She also changes his bed linens, which are generally soiled with urine and waste. Add to that, because he stays in bed, he eats meals in bed and constantly spills. Yesterday I cooked a beef pattie, buttered potatoes and green beans, he managed to spill the vegetables in the bed. I got him to change his diaper and undershirt and that was it for the night. I then called my sister, my confidant, and told her how depressed I am. She has worked as an aide herself, so she understands. She suggested I find a support group for caregivers. I'm gonna do just that after I'm done posting here. After our talk, I realized my husband's life can only end one way. I'll take care of him till I drop, then he'll go into sone kind of assisted care (he's a veteran) and eventually he'll die. But he's very proud and stubborn and every time I even mention some kind of institution, he screams "I refuse to go into a Nursing Home!!!" Which only re-inforces my opinion,I'll take care of him as long as I'm able, he'll be in some kind of institution, and he'll die. I've looked into Adult Day Care thru the VA, and it's pricey-$70 if I drive him, $120 a day if they pick him up. And as a VA in-patient, he would have to apply for Medicaid and our finances would be strictly controlled. Both he and I have pensions from our past government jobs, plus he gets

Social Security. I'm not looking for advice here, just some sympathy. I feel like crying. I'm a slave to a loud-mouthed demanding man. "Get me a drink...I spilled my drink, clean me up...Bring me my urinal bottle...I'm thirsty, what drinks do we have?...the demands on me are endless. I give up.

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So sorry, Jannie. Keep talking to your sister. When your aide is there, do you get to go out and do things just for you? I hope you can. Does the VA have a caregivers support group? Or does it offer respite care? I hope you can find resources to make the future brighter. You are very brave to be tackling your husband's care.

    Bookmark   May 25, 2012 at 12:31PM
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Jannie, Check Caregiver.com. There are scads of groups on Long Island. Even if a group's description isn't perfect for you, check it out. You may find a group leader or other people who are good for you---people who will understand what you are going thru, people who will let you vent.

Here is a link that might be useful: Caregiver.com

    Bookmark   May 25, 2012 at 12:43PM
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I had two doctor's tell me if I didn't end my stress I would die before my husband then who would look after him. I still didn't do anything about it until my friend said, "Your life is just as important as his". I heard her and put him in a care home. It has taken me since 2007 to recover my health.

    Bookmark   May 26, 2012 at 11:13PM
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I meant to add this if you ever decide to put him in a care home, do not tell him. Work it out with the care home and have someone come and pick him up. He could hurt you.

    Bookmark   May 26, 2012 at 11:15PM
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Sushipup, thanks for the link. I also saw a listing in the paper about care giver support groups on Long Island (there are plenty). That's my next step. Thanks so much!

    Bookmark   May 27, 2012 at 8:30AM
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Remember that this isn't the man you married. The man you married would understand what you are going through. What would HE think that you should do?

    Bookmark   May 27, 2012 at 10:52AM
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Does your area have an organization called Council on Aging? Have you talked to the social services at your hospital, or the Dr's As to a home, do you have any relatives that could/would help you, not in care but support and advice. Could you take a list of his meds to the pharmacy and find out if there is conflicting problems. Are you going to more than one Dr.? You do need help and either the medical staff should help you or other groups like I suggested. He cannot be asst. living, because he cannot take care of himself, so it has to be a nursing home, and sad to say, most of the VA homes are full and the people don't always get the best care. Another thing make sure all the legal paperwork is in place before you make any moves. I wish you the best.

    Bookmark   May 28, 2012 at 3:36PM
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If you ever have to put him in a home, you need to make an appointment with SRS as it's called in my state. You can do a division of assets and it will not leave you broke. In my state $19,000 or less in savings you get to keep all of it. There is also a minimum on your income. If you have over that they give you the home and one car, the rest of the assets will be divided. Then when you spend down to half, he will go on medicaid.

    Bookmark   May 28, 2012 at 10:52PM
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If he is getting a pension plus what he gets from Social Security, it might be enough to take care of nursing home charges.

    Bookmark   May 28, 2012 at 11:18PM
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I don't think so. I paid $4,000. plus every month for my husbands care. Our income of soc sec and pension was half of that. The division of assets protects the well spouse.

    Bookmark   May 29, 2012 at 6:26PM
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Jannie, sending good wishes your way. Stay strong.

    Bookmark   May 29, 2012 at 9:26PM
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Oh Janie you sure have my sympathy I know exactly how you feel. In my case itâÂÂs my 91 year old father. He is driving me crazy itâÂÂs been 8 years to the day that my mother passed away and every year it gets worse. He still lives alone I know he is lonely but he has these panic attacks and obsesses on everything. In the winter itâÂÂs his health, its better than mine IâÂÂm almost 70, we go to doctor after doctor they never find anything wrong. The doctors give him medication he doesnâÂÂt need and all it does is make me spend the day in the emergency room with him. I donâÂÂt have a life anymore. His newest obsession is about money, he has a lot, itâÂÂs been in trusts for almost 30 years. My sister who has health issues want her inheritance now and I mean now! He has always been giving and gifts us the allowable amount every year but now she wants what is in the trust or maybe itâÂÂs her much younger husband that sees she may not out live him and wants the money comingled before her kids get it. Everyone, including my father, walks on egg shells around my sister. My brother is an alcoholic and is no use. Well IâÂÂm done walking on egg shells and am going to go ask her why she feels so entitled when she know very well that if I have to spend all his money he will be taken care of first. I do have all the powers, she actually accused me of trying to keep the money for myself, and she is that stupid that she doesnâÂÂt understand any of the trusts. We actually recorded every visit with the attorneys and I given copies to both my siblings but all she heard was I have the power!

At this point I spend almost every day managing his affairs, driving his everywhere and endless phone calls. He was banging on my door this morning before I even brushed my teeth with more endless question that at this point I know he will never understand again. Someone, my brother-in-law ?, is giving him all this advice about what to do with real estate, bank accounts and personal property for what reason I havenâÂÂt figured out yet. Everyone in the family knows how the trusts are set up. God know every conversation I have had with my father for the past 8 years are about what to do after he dies. I would gladly give up all the money if he would just leave me alone. I guess I just needed to vent but I really do understand what you are going through when someone takes your life away and you feel powerless to do anything about it because itâÂÂs a person you are suppose to love and care about.

    Bookmark   May 30, 2012 at 1:23AM
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not2old, I suggest your sister check on the laws before she demands early inheritance. She might be in for a terrific surprise if you have to put your Dad on Title 19. They might very well come after her EARLY inheritance and she will have to cough up the money she got from your Dad. Stand your ground. Sounds like you are doing a terrific job. Maybe the brother-in-law would like to take over your job beings he's the one in such a hurry for HER money. Always nice to be able to sit back and complain about how someone else is doing all the work.

    Bookmark   June 9, 2012 at 2:52PM
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How are you doing Jannie? Haven't heard from you for awhile..
(( Hugs))

    Bookmark   June 9, 2012 at 9:12PM
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IâÂÂve been wondering how Jannie is doing also. I hope she was able to get him in a home and didnâÂÂt have a breakdown. As someone said her health is just important as his.

Thank you brownthumbia for the kind words. The last few days have been quiet for a change. No word from either of my siblings after I sent both an email telling them to just stop. I think I put the fear of god in them by telling them just how itâÂÂs going to be.

Monday we start a new doctor, geriatric endocrinologist, that hopefully can find out what the pain is in dads legs. This will involve several trips to the city, itâÂÂs a 160 mile round trip that IâÂÂm not looking forward to. Not sure what title 19 is but my father will never qualify for any kind of assistance. The issue with my sister is when my mother passed away my father split their estate and put moms half in an irrevocable trust for us children. It only use would be if my father should need it for his care, very specific rules, so it canâÂÂt be dispersed until my father passes. It just keeps growing and in a way my sister is right 1/3 of it is her money she just canâÂÂt have it yet. If she should die before my father it will go to her children. Same with me if all this stress kills me my DH gets nothing it all goes to our daughter.

    Bookmark   June 10, 2012 at 1:36AM
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My thoughts are with you. I hope that you can come up with a way to make this work so that you are not always the one caring for your husband.

My thoughts are going back to your children? ( if you have any)
If so could they come and help you out? Maybe find out if you can get more help from the VA with 24 hour care for your husband. I am sure there is Programs out there to help with the cost of it .

If not maybe it time you all moved into a asst living place. We have them here . they are small apartments that are like a Nursing home . but it gives you your own apartment. But there is 24/7 CNA's and nursing staff. So maybe you can get help with the care of your husband and still have own place to live. Just a thought anyways.

    Bookmark   June 19, 2012 at 1:46PM
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I, too, hope Jannie has worked through things and has found a solution that gives her and her husband better peace and care than they were getting.

It's a hard decision to make--placing a loved one in an assisted living environment, but I've seen too many people put it off. Until their loved one, in the throes of the confusion caused by the disease, has attacked and physically harmed the spouse. Not because they really wanted to, but because they saw them as strangers, in a scary world full of upheaval.

I had to make the decision to put my aunt in assisted living. It was certainly hard, but after doing it? I realized it was the best thing--for her and for me. She was cared for 24/7 by people who were trained to take good care of her. She was living with her peers--others who had similar health issues. And it freed up my time and EMOTIONS so that we could spend our time enjoying our visits, rather than me being stressed over the various aspects of her care. In a lot of ways, I regret that I listened to my mom's pleas not to go to a facility--I honestly think it would have been a better choice for her, and once there, she'd have found it was a nice solution.

Another think to consider--it's so hard to mention this to people--but most folks wait too long to ask for help from Hospice. They are WONDERFUL, and provide so much for the patient--all the necessary equipment, nurses, aides, medications, incontinence supplies, therapists and counselors. And they offer support and counselling to the family. In many cases, there's no charge to the family (the group I used for my aunt accepted whatever Medicaid paid, and didn't bill for any balance).

Also, have you looked into adult bibs? Might help keeping things a little less messy. There are some that are made to look fashionable--so they don't look like oversized baby bibs.

Hang in there--it's an honor to care for one of our loved ones when they need it--even if, on occasion, they aren't able to appreciate that care.

    Bookmark   June 28, 2012 at 12:05PM
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Hi it's me, Jannie, the Original Posyter. I haven't posted in months. Things have got better "for me". DH is still at home, I'm his main Caregiver. But we hired a care aide from an agency three days a week. He actually looks forward to her visits. She shaves him, helps him take a shower, makes him lunch, encourages him to do his Physical Therapy exercises. He was having a Physical Therapist come to the house two or three times a week but he reached the Medicare Cap of $1800, so no more visits till January. He's a Veteran but the VA charges for Day Care. DH isn't interested in "that stuff". It would involve spending two and a half hours a day on a bus. Not for him. So the Aide and I do the best we can. He's pretty much confined to bed, wears diapers, but can navigate the house (and stairs) when he has to or wants to. He really cheers up when our 2 daughters come to visit. I try to have then over for dinner at least once a week. I have attended several Caregiver "Well Spouse" Meetings and it really helps. Getting to "vent" around others who understand does help some/ a lot. I even had a guy at a meeting ask me on a date. I declined but it's nice to know I've still got "it".

    Bookmark   September 20, 2012 at 9:35AM
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Jannie, thanks for the update. It sounds like things are going better and that you've established a rhythm for your weeks. I'm glad you found an aide that is working out for you and that your husband likes. Good to hear that you've also found a support group.

Take care of yourself and continue to check back here with updates or venting.

    Bookmark   September 22, 2012 at 3:38PM
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Thanks, Jannie. I'm the big advocate for support groups, and your experience is why. We all need people who understand what we are going thru, we need each other.

Keep in touch, please!

    Bookmark   September 22, 2012 at 3:45PM
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"Hi it's me, Jannie, the Original Posyter. I haven't posted in months. Things have got better "for me"."

Glad you posted back. I was wondering how you were doing. Glad your daughters are involved. I hope your kidney issues are well under control. Things always work out better when there are several hands to share the job.

Always a pleasure to hear good news!

    Bookmark   September 25, 2012 at 12:19PM
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