Desperate need of advice

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I am a 43 year old woman who is the sole caretaker of my eighty year old parents. My mother has Alzheimers and my father has degenerative disc disease in his lower back, hips and knees. He is blind in one eye and VERY hard of hearing. Both are incontinent. I have Crohn's disease and after three surgeries, have yet to go into remission. My mother has taken up a habit of wrapping her feces in toilet paper and hiding it throughout the house. She doesn't like to throw anything away. She also hides raw food in drawers. I moved back home to care for them full time over two years ago. My husband divorced me because of this decision. I have two sisters and a brother who live in the area, but aren't interested in helping out. I have spent every dime of my life savings and am now living off my credit cards. This isn't about money. I went to Medicaid to find help. They said my parent's "earned" too much money because of their social security checks. I went through social services and they said because my parent's home is on two acres of land, they can not help be cause they have a "rule" about property ownership. I tried talking to adult daycare facilities in the area, but because my mother is incontinent and won't continually wear diapers, they can not watch her. She is having severe control issues. Which is understandable. She fights me on EVERYTHING. I try and bathe her and she physically strikes out. I try and dress her and she takes the clothes off as soon as I have her dressed. I prepare a well balanced dinner for the both of them, and my mother will throw it on the floor and demand a peanut butter sandwich. I give her a peanut butter sandwich and she demands something else. She keeps telling me, "You're not the boss of me!".

My sister came over last Christmas for an hour and my mother behaved like a saint allowing my sister to help her in anyway she wanted. This causes my siblings to think I am out of my mind when it comes to needing help. If I could get someone in here to bathe her, wash and dry her hair, brush her teeth and dress her each morning would be like a new lease on life for me. I am going to have a yard sale and sell everything I own to raise money to get help for her. My question is, is there a

specific type of nurse I should be looking for? Is there anyone who offers this type of service? It is mentally and physically exhausting to go through this every single morning. Please, if anyone has any suggestions, I am open to them all. Thank you for your time.:banghead:

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It sounds like it is time to look at nursing home placement.

There is no "special nurse" or any other person that can fix this problem. Your mother probably allowed your sibling to do think she is "ok" because ALZ pts are notorious for hiding their conditions for a long period of time and knowing who and when they can show their true selves. You are the "bad guy" because you are at home trying to make sure she stays safe, clean, and relatively healthy. She resents you because she knows that she is confused and that you should not be in the role that you are in, but she also knows that there is no choice for her.

It is highly unlikely that you will get anyone to come into the home to help without spending LOTS of money - as you would have to pay them privately without help from medicare.

This will probably be the hardest thing in life that you will do, but you cannot continue to live in a situation like this. You have already lost your marriage. I realize that you feel responsible for your parents, but it is time to look at the big picture - this is more than you can handle and you either must put insist your siblings do their share, or get nursing home placement so that you can care for your own health issues. This is only going to get worse.

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Specializes in CVICU, Burns, Trauma, BMT, Infection control.

Gosh,you've got a full plate. I am doing something similar in caretaking my elderly parents now and they aren't as sick as your parents are and it's kicking my butt. I know as a nurse you expect to be able to take care of your parents or anyone you love but quite honestly it sounds like way too much. I also have a sister who doesn't help me in the least,some people just can't.

You yourself have serious health problems and both of your parents sound like they need a LOT of care and money is a problem. It doesn't mean that you love them any less if you get them the help they need and you don't kill yourself with the incredible stress and work.

Power struggles with aging parents are wicked,my mother doesn't have altzheimers dementia and it's all I can do to keep her safe,she wants to do things that she has no business doing(like climbing ladders,using the stove-she's set fires). My Dad has fallen twice and I have help here. My nephew(42) actually moved in to help me care for them because it's full time job.

What you're doing is admirable but it sounds like way too much.

There are resources like the council on aging and so on. Just look for resources on the net under caretaking or elder services and give yourself a break and get some help.

Personally and this is just a suggestion I would consider getting power of attorney(since your siblings aren't helping you) selling the house to put them in a facility that is qualified to take care of Altheimer's pt,they have programs that your Mom could attend,she would have friends her age and they could care for your Dad and you could have your own life again. It might be what's best for all of you IMO.

Please take care,I am going through something similar and you can private message me if you want. I am further along in the process.

Good luck!:redbeathe

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Specializes in ICU, Telemetry.

Okay, this sounds completely awful, but...

Move out. If there is a caretaker living in the home, your parents will be the last to get any help. Tell their doc you are moving out of state in 30 days, and if they don't get a placement, they'll be alone. If he bawks, move out, then call social services.

Why do I say this? We had a nurse at our hospital, doing the same thing, and she ended up losing her job d/t frequent absences. Her dad had the alzheimers, and mom was an invalid. Turned out she fell asleep, dad decided to start a fire in the fireplace *they didn't have a fire place* and the house burned down. The mom and dad died from their injuries, and the nurse was in a burn center for months.

You can't be awake all the time, and between the two of them, they can be.

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Specializes in Geriatrics.

Hey Girlfriend...I understand too. My dad passed....my husband and I sold our house mom sold hers..we purchased one for all of us...six months later my husband left...he's now back. Taking care of my parents was a condition he had to agree to before I would marry him. A second marriage for me. I'd have preferred to remain single. Anyways...I care for alz patients etc in my ltc and I can tell you ...it's only gonna get worse. Love and honor for parents doesn't mean giving up your entire life for them, imo. The care and therapy that is available to them in a ltc is often SO good and likely the BEST thing that you CAN do for them. You're of no help if you kill yourself in the process you know. I understand wanting to care for your parents as long as possible...but even "Wonder Woman" retired eventually! Please for yourself and them...look into a ltc facility nearby...you can involve yourself there as much as necessary...but have a life too and maintain your sanity. Give yourself PERMISSION to let go...and the guilt too. God Bless you girlfriend...remember...you have choices..GOOD CHOICES!

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to answer the asked question, nope nobody is going to help you unless you pay privately.

the bigger picture, why did you give up you marriage to do this?

i dont for see that you can save the home and land at this point....if you father is still competent he needs to make the dec. he needs to see a lawyer and see what the legal/fiscal reality is....and your mom needs to be in home of some kind...now.

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Specializes in CVICU, Burns, Trauma, BMT, Infection control.

I lost my job from frequent absences to care for them too.

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Specializes in PICU/NICU.

Well, hon, I think you have received some sound advice here. I would just like to offer you a (((hug)))! Please... whatever hard decision you must make..... take care of yourself too!:redbeathe

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Specializes in Vents, Telemetry, Home Care, Home infusion.

please rethink accepting services from [color=#0000cc]office on aging.

here is link to medicaid estate recovery

states are prohibited from making estate recoveries:

  • during the lifetime of the surviving spouse (no matter where he or she lives).
  • from a surviving child who is under age 21, or is blind or permanently disabled (according to the ssi/medicaid definition of “disability”), no matter where he or she lives.
  • in the case of the former home of the recipient, when a sibling with an equity interest in the home has lived in the home for at least 1 year immediately before the deceased medicaid recipient was institutionalized and has lawfully resided in the home continuously since the date of the recipient's admission.
  • in the case of the former home of the recipient, when an adult child has lived in the home for at least 2 years immediately before the deceased medicaid recipient was institutionalized, has lived there continuously since that time, and can establish to the satisfaction of the state that he or she provided care that may have delayed the recipient’s admission to the nursing home or other medical institution.

medicaid wavier services were designed to keep our oldest out of nursing homes but require them to whittle down personal savings first.

since you have lived in your parents home over 2 years now, estate recovery regarding taking the home should not occur if you continue to live there. however, if you choose to move, then the state does have the right to deduct amount of monies they've spent on caregiving from proceeds of the home. in pa, they have raised the personal asset monies to $5,000 to allow for repair/home maintenance.

family meeting is definately in order here as you have assummed all the burden. in my 20+years of homecare, i've seen caregiving sibling drive other members away with controlling behaviour and martyrdom too. what good is keeping the house for siblings to divide up asset after parents death if your own life is being compromised? you need time off.

have you heard of caregiver burnout?

secretiveness is classic with alzheimers patients.. i've seen your mom's behaviour so many times. sometimes they respond to routine periodic vistor better than "the general" (gramp's word for me) who guide's their daily routine. you are really looking for personal care assistance/home health aide care for your parents. going rate in philadelphia area is $20-$25.00/hour from a certified agency with bonded employees who receive good supervision and ongoing training.

look to see if you have a

pace (program of all inclusive care for the elderly) program in your area. since medicare/medicaid program, recovery also applies.

an interdisciplinary team, consisting of professional and paraprofessional staff, assesses participants' needs, develops care plans, and delivers all services (including acute care services and when necessary, nursing facility services) which are integrated for a seamless provision of total care. pace programs provide social and medical services primarily in an adult day health center, supplemented by in-home and referral services in accordance with the participant's needs.

check out:

elders & families

designed to assist older persons and their caregivers quickly obtain information and resources on a variety of aging-related topics. the information will help you become more familiar with issues affecting older adults, and the services and opportunities available to assist them

hoping that you get the support and services you need.

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My husband had retired from the Air Force after twenty three years. He wanted to take "a few years off" from work while I went back to twelves at the hospital. He also made the decision on his own to have his daughters come live with us. I had to decide, with my Crohn's, if I could care for my parent's, my husband, his children, my career and my own health or put my foot down and care for my parents. They truly needed help, he didn't. He just wanted my paychecks to continue. :)

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Thank you to each and every one of you! You all are going to make me cry! Thank you for being so sweet, forthright and honest. I feel as if a thousand pound weight has been removed just by hearing the thoughts I have had aren't abnormal or wrong. I have really struggled with the guilt for a long time. I do get angry and resentful from time to time. Thank you for reminding me that is okay. I am sending out HUGE hugs to each and every one of you!! Thank you! Love, Sandy:heartbeat:yeah::bow:

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Hugs from me, too. This is an unreal load. I can't believe you have been able to keep this up, like you have. You really are a wonder-woman! Great suggestions from all to you. Additionally, see if there is a support group in your area for caregivers. Perhaps the local Alzheimer's Assoc. can help you locate this. Go to http://www.alz.org for other suggestions.:redbeathe

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