I CANNOT do this anymore. I want my life back from caregiving.
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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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
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!
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.
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
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.
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
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
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.