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My Mom and Dad have been with me for 2 years. My 2 sisters promised to help., well that is not the case. I have 5 grandchildren that I want to be able to enjoy. My husband and I have worked hard to be at a point in our lives where we should at least be able to go out to dinner once in awhile, never mind being able to take a vacation. My husband is a very patient and caring person, but I think even he is at the end of his rope. We have made quite a sacraifice to care for my parents. Mom has demantia and cannot remember anything for more than 2 minutes. Dad was an abusive alcholic my entire time growing up and is still very stubborn and uncoperative. What are my options. What can I do. I feel such guilt and responsibility for them. Medicaid is almost impossible to get, because Mom and Dad made around 40K with sell of their home. I need help. I cannot do this anymore. Any encouragement or suggestions would be greatly appreciated. I cannot continue to go on the way things are now.

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I have felt and experienced all that the comments below writers have written about. Please God give me the strength to do all that I have done, am doing, and will be doing in caring for my widowed mom. I don't know how much more I can do to be the best son in caring for her. No one but a fellow caregiver in my position could possibly understand the sacrifices I have made in giving my mom the life she deserves in her last few years on this Earth. So critics, STFU!
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Additional info for searching on services in

Waivers are vehicles states can use to test new or existing ways to deliver and pay for health care services in Medicaid and the Children’s Health Insurance Program (CHIP). There are four primary types of waivers and demonstration projects:

Section 1115 Research & Demonstration Projects: States can apply for program flexibility to test new or existing approaches to financing and delivering Medicaid and CHIP.

Section 1915(b) Managed Care Waivers: States can apply for waivers to provide services through managed care delivery systems or otherwise limit people’s choice of providers.

Section 1915(c) Home and Community-Based Services Waivers: States can apply for waivers to provide long-term care services in home and community settings rather than institutional settings.

Concurrent Section 1915(b) and 1915(c) Waivers: States can apply to simultaneously implement two types of waivers to provide a continuum of services to the elderly and people with disabilities, as long as all Federal requirements for both programs are met
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Locate your nearest Agency on Aging or Senior center and inquire about getting help. Your parents should be paying you until they spend down their money to get to the point of qualifying for medicaid. There is a waiver called 1915c many states use or the 1115 waiver. Do a google search on what your state provides. In most states they will pay for help and to qualify you can exclude 1/2 your parents net worth as your mothers and be at 300% of poverty level yearly income about (28,000 a year). You don't need to impoverish your mother or father to qualify if one needs more help. Again search on your state.gov website for senior services. If anything you can find free help in putting together a program for home help while spending down their assets. You have to really push hard and google search tons because I swear the states try and hide everything available on purpose.
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Good for you! Your devotion to your mother is admirable. It is wonderful that you intend to care for her yourself.

But here's the thing: you NEED some breaks. You need some mini vacations. You cannot do this alone indefintiely, and trying to is eroding the very thing that is so precious: your devotion. Call her case worker. Call a social worker. Call Aging Services. Find out what respite services are available to you, and how they are paid for. Follow through. Get out of there for several hours every week.

Also, the time may come when she will simply need more care than you can provide, especially with swallowing and walking problems. Start researching now what local NH would be suitable. If you never need one, fine. But it is better to be prepared than to have to make decisions in crisis mode.

Hugs to you!
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Everyday I think I can't take it anymore. Every single day. I'm in my fifties, alone, and can't find a good job anymore after being laid off in 2008 after nearly 19 years of continuous employment. So I care for Mom.

Mom is 93 and a stroke survivor. Most of the time she is very irritable and hard to be around. The thought of putting her into a nursing home of any kind bothers me though. She can still eat on her own, but has great difficulty walking. She is starting to have problems with swallowing. She's in pain much of the time. Her awareness level is low.

This morning she refused to get out of bed so I could clean her up after she urinated on herself in the night. I had enough of her obstinate ways and told her I would call for an EMS (emergency medical service) to come get her out of bed. Gave her fifteen minutes to make up her mind. She challenged me and told me I wouldn't do it. I told her exactly what I was going to say to the 9-1-1 operator and I guess that got her priorities lined up quick. There was always the chance the paramedics would take her to the hospital against her will for a 72 hour evaluation. A three day vacation for me. She got out of bed and cleaned her self up. The room reeked so bad of urine I had to open the door on a chilly morning and air out all of her blankets.

As she gets older, her irritability gets worse. I get snapped at when I haven't said or done anything to deserve. Man, that gets old quick. I'm trying to be sympathetic to her physical and emotional condition, but it's hard sometimes. I now pray daily to God to take her home with Him. I know she wants to die. She's attempted suicide twice by being in a dangerous way physically and not calling out. Both times I caught on to what she was doing and stopped her from killing herself by not asking for help.

There is no one to help me except a weekly nurse stopping by and a physical therapist. When Mom is around them, she's cheerful and paying attention. I'm thinking, is it me? Do I bring this out? Yet, when I ask if Mom if she would like for someone else to care for her, she tells me she only wants me.

She's old, an invalid, afraid of being alone, and keeps reaching out to me. As long as she keeps eating on her own and will stay reasonably clean, I'll care for her even if it costs me.
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Bonnie, I can relate! I feel your pain, and I think it's time to find a nice place for them to go. I moved my parents to a NH 3 months ago because we can no longer afford in-home care and my mom must have constant care 24/7 and dad can't do it anymore. (We have already been through 3 back surgeries because he tried.) I have felt guilt, anger, sadness, and despair, but at least I know there is someone to help them 24/7, I too, have a wonderful and caring husband...but I can not and will not let this tear us apart. I am an only child and I am doing everything I can to make sure they are comfortable and have everything they need and want. Dad is not happy, but mom (who is much worse off) seems to be taking it all in stride. I go visit them at least twice a week, and usually leave with tears in my eyes and another list of things dad demands. He will not participate in any of the activities and refuses to allow mom to participate. So I have the directors griping at me about that. It's been excruciating, but in my heart, I know it's the best thing for mom and for my family. Dad chooses to be there with her, but then complains constantly. I will be praying for you.
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Hey BonnieO,
I say the same thing every other day, "I want my life back". Then I start to think how it was in the "residential care home" where my Mother was for 1 1/2 years after her husband died: everyone else in there was worse off than her, no one to relate to, no attention, lousy food, falling at night because they can't "protect" them with guardrails on the bed, disgusting behavior at the dinner table by the other "guests", etc.
Even though her dementia has advanced, she is more with it being in our home, with the BEST care, food, activities--those places say there are activities, NOT; LOVE from FAMILY, people who SHARE her memories and can relate. Even though this situation gets on my nerves almost every day, FOR NOW, this is the best place for Mother. If and when things become too difficult, I will be realistic, and have already found the place--where the owner, a compassionate RN and geriatric pharmacologist, is a believer in LESS drugs is better, not OVER--DRUGGING, which is what they did in the other place. We are enjoying what quality time there is, and believe me, there is not much.
You have to weigh YOUR individual situation. My Mother's last husband was a jerk to our family, but left her with a good trust.
I, personally, could not and would not deal with an alcoholic or anyone who is abusive, and would not have them in my house in the first place. My Mother is weak and helpless in many ways. What the strong and compassionate do is to care for the weak and helpless. My Mother was provided for, and I often think how terribly sad that people do not think about "these years" and PLAN for them. Perhaps some do, and circumstances befall them--like financial crisis and poor investments. I hope you find the solution within your family. You have the same type of siblings that the majority of caregiver siblings have, as I have seen on this site: worthless.
Just do what YOU AND YOUR HUSBAND want to do, and God Bless you both, and your precious Grandchildren:) HUGS
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What state do you live in? I'm asking because here in California, a law has passed where if someone is in an assisted living facility and pay initially whatever the monthly rate is, the assisted living facility will not be able to kick someone out while they are transitioning to social security. Anyone with a disibility will qualify for social security. Then once your parents start recieving social security, the assisted living facility cannot charge them more then the money they are recieving from that. Your parents should even have a little bit left over for other needs after social security pays for their care . I hope this helps and maybe this law applies to wherever you are from. Best of luck to you.
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I know what you mean about the good days and bad - seems there is no 'normal' anymore is there....or actually, it's kind of scary how our sense of 'normal' and 'good' get redefined for us. And lonely - oh Lord - lonely. It's bad enough with parents. My own husband has many spinal problems and "will" be wheelchair bound within a few years according to the neurosurgeons. We have 50 acres and no help and most of the time, I'm scared out of my mind. A favorite line of a book I once read said, "...When you don't know what to do, you just do what comes next. Right then there were dishes to wash and children to be fed, so that's what I did..." There are no easy answers - especially when there are no real answers at all. Wishing you hope - Leslee
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Very wise and telling answer.....I am going through about the same thing except with a husband....His children are not participating altho told Drs they would be main caregivers...poo....that isn't or won't happen...we have 24/7 care with aids...but I am here 24/7 as well....it is SOOO tough....the days that are good, I feel wonderfully blessed taking care of hm....the other days, more than good....makes me anxious, sad, lonely and so totally frustrated...Thanks for your insights!
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I agree - take care of yourself. A drowning lifeguard can't save anybody. To endofaroad - it must have been a joy to have loving and sane parents growing up....I didn't have that, and I don't have that now. I do believe it is important that we do what we can to care for our parents. Having said that, I'll add that some parents were - and are -difficult and abusive -either physically and / or emotionally and they do not get better as they age. Too often the caregiver (especially it it's a son or daughter) becomes the target and, believe me, they don't shoot blanks. The wonderful nurse treating my Alzheimer's/schizophrenic father told us, "It's easier for me than you. I go home at the end of a shift. You never really get to leave because even when you're not physically here, you're still emotionally entangled." I'm finally learning that caring for someone does not mean you have to be the actual one caring for them. Sometimes it's saner if you aren't. I love my parents, but they are what's referred to as "toxic parents". They can't help it, they just are. And as much as I love them, I am not called to be a martyr to them. I've probably earned enough credits for a degree in geriatric neuropsychology (literally) in the courses I've taken on my own and the literature I've studied from journals of psychiatry, and the bottom line is that sometimes things aren't fixable and te best way to handle it is to put it in wiser hands that can go home at the end of a shift. And, by the way, BonnieO, your siblings should get to share with you every bit of the happiness you get to experience every single day in caring for your parents....after all, you wouldn't want to keep ALL that 'wonderful joy' to yourself, now would you........????! LOL and wishing you well, Leslee
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I have said it before and saying it again ...
CAREGIVER RULE #1 Take care of yourself, how can you give proper care to others when you are not well yourself. The guilt you feel is normal because you care and that is all good. You need to research medicaid law for your county and state. There is a great deal of info online. Noone is expected to live free, room and board and care is all a part of "spending down" the important part is proof of spending and in the "benefit of person in need of care" only, in order to maintain a good quality of life. Before applying you need to set up a funeral trust fund which has an allowable amount in my state cap is 12,000. Paper trail is what is needed for proof of assets income any transfers or property sales. If you call your local medicaid office they will send you the list of the copies that are needed to apply. I would look into long term care and move in that direction.The reality is you cannot continue it will only get to the impossible state, and the best interest for all is a priority. I visit Mom at NH which was last thing I wanted for her at the begining of it all... now I feel it is really the best for her and all others concerned.
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There is such a fine line between caring for a parent and caring for our own psyches....which comes first? For me, it rotates on a daily basis. Just when I think I have had enough (also on a daily basis) I cannot fathom placing my Mom in any insitution. It would take not being able to care for her at home adequately, before I would make that choice. Am I putting my life on hold? Yes. Do I regret it? Sometimes. I think that if I somehow had a magic ball and knew how long I had to do this, it would make it easier. But I just know that dropping her off at an ALF or NH would just about kill me...I don't think I would get out the door...but, that's me and my situation.
You, my dear, are on the verge of a serious breakdown. If you are a person of faith, you must know that God does not expect us to sacrifice our life and health beyond the reasonable.
Get some respite time so that you can think clearly and make decisions that you will not regret. You must have some peace in your life and with your choices.
Sounds like your parents may make enough money so that you can afford in-home care. I just hired a lovely woman who Mom really likes. She understands the mood swings of an elderly person, so I don't have to hold my breath. Even though I just hired her for a few days a week, it has lifted such a heavy weight from my shoulders. It is also good for your parents to interact with others.
I have always appreciated your posts in this forum...you have helped so many; including me. Take care of yourself...I know you wouldn't ask this question unless things were very serious.
Good luck,
Lilli
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I promise you that when you stop asking GOD for what you want, He will grace you with what YOU NEED!!! Also, your selfish sisters will answer to their creator when standing before him. "And, where were you two when your sister needed help with mom?" You (we) always have a choice, my friend. I left Atlanta, my home, business, friends and moved back home, in their house, ugh, however, my LORD knew I would make the right decision. I did!!! I have a brother five minutes away and an estranged sister two hours away. No help from them either. Mother has Alzheimer's but she took care of me; she also made a choice...Giving me life, that included my sharing it with her, however long that might be! Please hang in there... Let us know how you are doing, okay?
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What an angel you and your husband have been to take in your parents and care for them. You're a smart lady to recognize it is no longer working out! There are many options for their care - yes it will cost money. But isn't that why it is there? First pay yoruself and your family something for the care you have given. Next call about senior apartments, using aides to help your dad with your mom's care. another option is assisted living (AL) apartments where their needs are assessed and then help is given in those areas. They will use their money to pay for care, and most facilities will assist them in obtaining Medicare when their personal funds run out. Always check ahead with AL to be sure they'll accept a year or two of personal payment and then allow for Medicare to take over.
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oh my goodness; you sound like you have had the same problems I had!! I was blessed, though it was a great hardship. My father cursed me and told me to leave florida; so I went home to New Mexico, where we had all 3 kids join us, and have all been successful. Once I left, my Dad moaned and groaned, and pleaded for me to come see him again, but the pain went too deep, and the cruelty also; my brother went along with it, until he got Dad after Mom died, and then my brother was all apologies,and regrets,and since I love him so, we have totally reunited...and I praise God for that blessing. I was his BIG sister,and always took care of him, and protected him. When Dad went 'mad' on my brother, he suddenly understood all I went through. He had to care for him for 6 months, and it was rough. I cared for both Mom and Dad for 1 1/2 years,until Dad went truly crazy, and told me to' See if MY God could get me out of this one!" I took that as a promise my God would,and he did, and I pray he will do the same for you!! God bless and free you from bondage.kat
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I can certainly sympathize! You certainly need help....do you have hospice coming in for your mom? Here they even have free sitters to come in 2 times a week and sit for 4 hours at a time..they have free bathers, will get your mom's drugs for free....and they are marvelous! Some of the hospices have their own respites...they will remove your mom for 5 days FREE.....then let your sisters take your dad over! Your mother's physician can order hospice ....that should help some....
BUT before you keep giving your life up and your sisters live their own without any assistance.....Get your parents OUT of your home!.....Give the money they made for their sale of their homes to the nursing facility...To be honest with you, your Dad may be happier somewhere that there are people his own age around! Assisted living and some nursing homes have programs to keep their patients busy
I would not hesitate to go forward in some manner.....Your family needs you too! Two years is an eternity with a dementia patient!

There are so many places to assist you in finding a suitable spot for your parents.....GET HELP immediately! Blessings to you and your family
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It depends on your values and your parent's personality to decide what to do. Sometimes making a small change can make a big difference. Getting a two hour break 3x a week and a night out every other week might be enough. If your parents have any money, use it to give yourselves a break by hiring a caregiver to come in as needed. Just a thought. Choose the way which will leave you with the least regrets.
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I should also add that my mother-in-law is VERY sensitive to the fact that she does NOT want to burden her boys. She and her husband loved doing things together when the empty nest set in, and she often tells me that she wants that for her boys also. Therefore, living with her kids was NEVER an option in her mind, not when she had money to take care of herself. Her doctor is Asian, and his first response to her not being able to live alone anymore, was to rotate between the 3 boys. Live with one for 4 months and so on. She automatically dismissed that option when she talked to him (while I held my breath).
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Put Mom & Dad in an assisted living home. My Mom has been in an assisted living home for 5 yrs. It is expensive but you have to "spend down" all that income from the sale of the house, as an elder care lawyer told me. Yes I have spent down now because of the assisted living home. Mom has been very comfortable in the assisted living home. My husband & I have gone on vacations and didn't have to worry about her care. We go get Mom for Sunday dinner, take her to the mall etc., then never have to worry about her care because someone is always watching over her, NOT US. She has enjoyed her time because she is with people her own age and medical problems. This week I will be placing her in a skilled nursing home.Her money is "spent down" and hoping to get her medicaid in 3 months to pay for medications & nursing home. Her medical condtion now needs her to be in a nursing home.
I do have a little guilt, but I need my life too. She has lived a long life and never had to take care of an elderly parent or husband.( Dad died 8 yrs ago) I have been Mom's Legal guardian since then. I understand because I say it everyday, I DON'T want to do this any longer. But she is my mom, my 3 other siblings tell me she is your PROBLEM. They have no contact with her maybe a call every other month, never a visit from them. SO in closing, your MOM &DAD need to be in an assisted living home so you can have your life back. HUGS!!! I understand.
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I LOST MY LIFE FOR 10 YEARS WITH MY BELOVED MOM, AND 5 WITH MY BRILLIANT DAD. BOTH DIED IN 2010; 6 MOHTS APART. STILL RECOVERING, AND WOULD DO ANYTHING TO HAVE THEM BACK. SPENT THE LAST 5 YEARS OF THIER 65 YRS OF MARRIAGE IN NURSING HOME; ALZIEMHERS ,SP, AND DAD HAD BREAKDOWN WHEN 5 YEARS PASSED AFTER MOM LOST ALL SHORT TERM MEMORY DUE TO OVER ANETHESIA DURING KNEE OPERATION. SHE NEVER RECOVERED,AND WAS AWARE SHE HAD LOST HER 'MIND'; SHE WAS SO SMART, AND MY BEST FRIEND. IT IS OUR DUTY TO CARE AND LOVE OUR PARENTS; FOR WHEN THEY 'LEAVE' WE LOSE THOSE WHOM WE HAD SINCE BIRTH. GIVE, AND REJOICE YOU ARE ABLE TO DO SO, WHEN THEY DID SO MUCH FOR YOU ALL OF YOUR LIFE. MY OPINION, ONLY. I WISH YOU BEST OF HOPE, AND RESTORATION OF YOUR VITALITY. KAT
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You need help. Can you put the screws to your sisters and tell them they either help you, or mom and dad are moving in with them? At least take some time off with your husband somewhere. Put mom and dad in a respite apartment in an asst living facility for a week. Most asst living places have them. Get the heck out of dodge for a respite please. Your marriage should come before your parents. I know that's easy for me to say, but I truly believe your first responsibility is for your husband and then children. I always worry about women that put their parents before their husbands. Then the husband finally has enough and leaves, the parents are gonna die anyhow, and then the woman is left with nothing.
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