When your friends and family don't understand!!!

This site is so great whatever problem you are having usually some one else has gone through the same and can give advice and most importanly support I will never forget comming here over 4 yrs ago and finding such great people-it gave me the will to continue on the journey of caregiving with some hope that it would come out all right.

No and and that is what i will recontact them and ask specifics on the "elderly waiver" I am so happy i found this site, the discussions have re-ignited my faith and motivation to Keep digging for get help! I had been so exhausted/burnt out /down/overwhelmed I lost my faith. I feel so much better just knowing I am not alone!! And I had really taken the abandonment so personal and now i can understand better! Yesterday, I actually had a to a friend in beauty school and she gave me a mani/pedifor the first time in 7 years, it felt wonderful, and refused to take any money! Thank you all and Keep the faith!!

jujubean, I don't know how it works in Oregon, but here what the Elderly Waiver recipient is expected to pay for depends on income levels. My mother pays nothing. My husband pays up to a predetermined amount out of his SS check. Were you specifically looking into the Elderly Waiver program? Was the person who told you qualified to speak about that program?

Jeanne Gibbs Thank u very much for the info but just to be clear. what I was told is that the cost to have someone come in our home n care for her would be deducted from her ssi income at an hourly rate. We barely get by on what we have ergo our dilemma...but yes i need to keep digging each new contact enlightens me to new info, thank you again!

This is from an Oregon website:
"What are Medicaid Waivers? Medicaid pays for long term care services in nursing homes. For nursing home qualified persons that choose to live at home or in a residential community, Medicaid will pay for those services if they can be obtained at a lower cost. These are called Home and Community Based Services, Waiver Funded Services, Medicaid Waivers or simply Waivers."

Jujubean, it sounds like you think that Medicaid is only for nursing home care. Not so. I applied for Medicaid when I thought my husband might need nursing home placement at any time. I've been able to keep him home for over 9 years now, and between Medicaid and the companion program whose purpose it is to help elder stay in their own homes (elderly waiver) we have gotten much help over the years. Dental care, hearing aids (both for my husband), a walker, a wheelchair, a bed rail, an adult day health program, and now that he cannot attend that, a personal care attendant, a homemaker for cleaning, and a medical alert system. Since his SS income is over the limit, we have a fairly high co-pay or deductible for these items. For us, these items and services are not free but much more affordable. My mother is also on Medicaid and Elderly Waiver, and since her SS income is very low, she has no deductible or spend-down amount.

I think it would be worth talking to a Social Services needs assessment worker about what benefits would be available if Mom went on Medicaid and DIDN'T go directly into a nursing home.

Good luck!

Amen to that Jujubean! Seems like the people who truly need the help aren't getting it and the ones who don't really need it get it handed to them hand over fist. I'm generalizing though. It has to be so tough on you being alone. It is a perspective that I hadn't thought of since my extended family are there, but only one has been constructive to the situation while the others have been destructive. I think you're getting really good advice on here. I get through the day by faith in Christ and knowing that He won't put more on my shoulders than He thinks I can handle. It doesn't mean we don't have to help ourselves though too and it sounds like you are reaching out for help. Leave no stone unturned because there has to be something helpful going on where you are at. Keep us posted. You may discover something none of us have thought of.

Yes Medicaid is an option,But in our current situation it is not feasible financially and it is a major perm change. We are looking into all options tho...Currently I must have a job prior to save up enough then once we transition i have to have a full time decent paying job close to home which is going to be nearly impossible in this lil tiny town we moved to. Or we wont be able to make the bills n mortage monthly as they will take all but $100 approx of our income to compensate for services!! But again it is an option to work at...Was just hoping for some respite...It seems it is all or nothing!!!! I will repeat myself tho cuz i am so frustrated. If it werent for me the state would have had the burden n $$ for her care the past 8 years! There is way more social services available to people/families who are irresponsiblly having kids they cant afford (pardon me not all are but there is quite a few) than there is for the elderly who have worked hard, paid their taxes n due's their whole life. so I digress...please tell me everything you know bout medicare/medicaiid/elderly waiver...It is like a pulling teeth to get information from some of these agencies!!! Thank you for your support!!!!

Just what Suzmarie said probably is true the usuall reason people are turned down for medicaide is because they have more money is savings or what comes in for social security or in other forms-she probably does not want to spend her funds but she will never get medicaide until she reduces her funds to what the level of money a person is allowed to have before getting medicaide. I agree even if she protests use her money for home care to give you a break-some elders are very selfish with where their money goes mostly because they want to leave their money for their kids both the ones who care for them and the ones who are too busy to visit or help with their care.

justawhim, I guess I dont understand. We used mom's money for her care, an in home caregiver. When her money was spent and gone we applied for medicaid. So I am wondering if she has too much money for medicaid, why can't that money be used to her care. I am confused?

I know how you feel, my mother and I are all alone...no support no help...my mom can walk but doesnt want too...so she gets worse everyday as I watch her glued to the tv...remember the kid on willy wonka and the chocolate factory..the one who was the cowboy and jumped in the tv set....well thats my mom!!!!!! she wanted to go the store today it took her 4 hours to get ready, because of the tv.....people say get help well, my mom has to much money for medicare, but not enough to pay for care........all the services available are for the low income, or the ones who have enough money to pay for.....i am in the middle......geeze it is frustrating..... i feel your pain... i wont say hang in there cause that doesnt help...nothing does....

Our place to call is our Office of the Aging-if your income is low they will provide low cost aides-also check with you local VNS they may know resourses and if you do fine help please share because what you are going through so are a lot of others and most of the information mentioned here is from other caregivers.

Jujubean, check with other state resources; most states have elder care laws and some resources. Also there must some Visiting Nurse Association that covers your area -- get their number and ask for Social Services help. They can help you find resources and make suggestions.

oh ya, I also am in a very small town. Little or no resources are available in these remote dated communities...i moved her to afford to care for her but not realizing what little support i would have!

oh ya, and there is no money in the budget to pay for the respite...i did check with medicare and they sed no... but I am learning thru the process to ask more than once or in different phrasing, or just a diff person on the other end. frustrating but you really got dig n dig to find answers! I will check with medicare again cuz I do beleive i have heard that b4 that they do offer some kind of respite! But again, unfortunately my folks were terrible with money as am I, so we are not able to pay for respite. we can barely make ends meet as it is she needs new glasses and I need teeth worked on, we cant do that either! I live with the pain!!! I also realize i need help and have enrolled in a financial stability course thru the local housing authority! Which is $40 lol, ironic!!!

Great responses, thank you all for your support!! jsut to be clear there is no family!! I mean none! It is Just Mom N I left in this world. No brothers sisters kids aunts n uncles....I do have cousins but they are across the country and were never close! having talked to em in over 25 ys! Friends who have offered are career caregivers (how we met) certainly qualified but maybe that why they dont wanna do it on their time off ..IDK...I JUST DONT KNOW WHAT TO DO ANYMORE.... I do think some truth in it being convenient for them...but makes it difficult for me to do the things "I" would like to do. one would like to think any help is good but if I have nothing to do it just seems like stress to me , to manufacture something to do...but idk cuz no one has ever sed "let me give you a break, I am gonna take care of mom, you go have some time to yourself". I just know how many things I have really wanted to do and had to pass on!!!! I am liking the feedback i get here tho lots of good ideas i am definitely checking out some new options, THANK YOU ALL!!!! LOVE N LIGHT, Julie

I have siblings who don't want to help because my mother put her trust in me rather than them. She needed someone to help her and my dad otherwise they would have both ended up in a nursing home. It's sad when age-old sibling rivalry rears its ugly head and rather than be supportive they choose to stand back and let me do it all and then have the nerve to criticize how I do it. I'm sorry, but if you're going to leave the majority for someone else to do then you have no right to criticize them in my opinion. Not only that but we are to honor our parents, so to not be as supportive of them as we could in order to take something out on the sibling who is doing the caretaking is really immature and kinda mean. Sorry, just how I feel about it.
Juju I would find a support group in your area. You have come to the right place on here because these people are awesome! Keep venting because it helps you out and helps us out so we don't feel so alone either. Praying for you JuJu!

People whosay those things to you do not really get it-some people think they have to give advice it probably would be better for you if they said they were sorry or give you a hug-also some people think you are asking for advice and that is usually not the case.

I take care of my mom, she lives with me, there is no one to help. my emotions run from feeling guilty to thinking i will be repaid in heaven...but let me tell you, when i mention my my frustration to friends the answer is usually....well grin and bear it....because when she is gone you will miss her, i wish i had my mother back...these folks who say that never took care of their mother full time and held a job too.....and i know i will miss her when she is gone.....it is the here and now that is the problem.

I live in a small town. There are no "resources" available for us...other than a nursing home.

We not only lose our loved ones but for many of us we lose ourselves because we are never the same again after the job is finished.It is very hard to rebound from the disappointment with the ones who we thought we could trust.Our health,finances,and outlook on life all take a major beating during and after and it seems nobody really cares what we just went through.A lot like many of the WWII soldiers who I worked with when I was young who didn't want to talk about "IT".Some never recovered but many went on and made the most out of life with a altered perspective on life and their fellow human beings.Like them we try to move forward knowing we attempted to do the right thing despite many mistakes and disappointments and learn to laugh once again.

Check with a good Nursing Home, some offer respite care for a week or so, maybe you only need a weekend or a few days off. Just tell Mom that she's going to get a short break and vacation at a place that will see to all of her needs but you willn be back to take her home. You'd be surprised at the help that is available just for the asking and of course paying...If your Mom has Medicaid this may be a sourc of payment. Best wishes to you!

You are all wonderful! I guess I could be included in the compliment. Well said by many of you. My sister pulls the double bind (a psychology theory which is interesting) ....she won't talk to you so then when you proceed without her she'll then say "you took this on". I am only remembering back; she hasn't talked to me in 5 years. She kept screaming that I snuck into town to take mom's money; i decided to stop listenin to the accusations and bring mom to s.f. to have a surgeon see her stomach. when the surgeon said mom needed surgery now i contacted my sister, she didn't respond so we proceeded without her which was in my mother's best interest of course! If I talked to my sister now I bet she would say, well you are the one that "took her"....well heck yes. You were screaming about money and I was trying to tell you about mom..I understand. Le'ts keep posting and sharing.

My mother is an airhead and I made it clear to her that I would not be able to care for her 24/7. It took me 2.5 years to get her to take out long-term care insurance; I am a nurse, a burned-out nurse. NO ONE should expect anyone to care for someone else 24/7 for the long-term. If she cancels the insurance, she cannot expect me to care for her -- she never saved a dime and I have given her all I can give her; more cash than 99% of kids ever give back to their parents. You can't fix everything for them and no one really expects you to sacrifice yourself. It complicates more when they are abusive and thoughtless. You must take care of yourself -- this does not mean you are selfish. You aren't a slave and they are not entitled to everything they think they are. They are not entitled to make you feel badly if you can't do it all. If they can't plan for their own future, they are not entitled to ruin yours. Get some professional support and do not allow yourself to be abused.

(((HUGS))) I understand what you are saying. I moved my MOM to live with us 6 years ago and I am glad I did but it has been a MAJOR ADJUSTMENT emotionally and physically . I am the only sibling left (* lost my brother at age 54 to diabetes). All the things everybody already wrote are true and it is very difficult ...but the one thing that seems to always be a comeback if I say I don't get time to read a book or have any me time anymore...seems to always have this reply ..," You are so lucky to still have your Mom and I wish I still did .". I know this and I am thankful to be able to have this time with MOM ...but this reply makes me feel guilty and doesnt help me with any solutions . NONE of the people saying it ever took their MOMS into their home and do the 24/7 care that I have done for over 6 years now. I have learned to ignore it . My Daughter had a comeback recently when I mentioned this to her...she said " Tell them YOU WISH YOU HAD THEIR MOTHER TOO !". HA...my daughter is a bit more direct but it did make me laugh as my mom is not easy to live with. ANYHOW..as I type this she is chattering away and asking me questions with no regard that sometimes I might be working or trying to pay bills etc. She asks questions daily and I try to keep my cool and answer he many questions or comments...but I have to go away if I want to read a book or do anything that requires concentration....or lock myself in my room ! Luckily I can answer a post here and feel like you all understand what I am saying. HANG IN THERE and try to keep a happy attitude ...and get away now and then even just to go sit and have a cup of coffee someplace and find ME TIME !

I think you need a plan to get professional help and respite. People who are paid to keep their word and who are used to caring for people. Call the local area of aging and get some assistance. Call the local VNA. I assume there is some benefit for alternate care. What if you become ill? What is the plan to care for them? You need a plan for intervention or you will get sick. No point on relying on people for free, get some professional help. What if you refused to do it anymore, what would the plan be? Start looking at options; maybe this is something you can't do this way. Doesn't make you a bad person or failure if you have to do something else. You did this for as long as you could ... and WHY are you doing this all alone? There is no glory or respect in killing yourself for this. Get help, get a new plan and get some of your life back.

From my experience and observing what's happening to my friends, as caregivers, we need to create a network of family, friends, volunteers, and profession to help us share the care. At times, caregiving can feel like a thankless and under appreciated job. Here are some tips that worked for us.

If your family members are unwilling to help with the tasks, ask them to contribute financially and show them how the money is spent. My mom use to send an out-of-pocket email to our family members and close friends on a monthly basis on what she was spending for grandpa. Eventually, family members started contributing financially due to guilt.

One thing that we did that was very successful was to create a list of people who can help for certain tasks or activities. We created an actionable 'to-do list' that helped us with many tasks. So, whenever someone would ask "What can I do?", we would have them pick something from the list. Some examples are

1. Janet will help with housecleaning on Wednesday
2. Bill will do grocery shopping on Friday
3. Mary will take grandpa to church on Sunday

As mentioned by other posters, links to organizations that can help you form that network to share the care.

Its hard. I balance a work week with relieving my brother when I can. He knows he can call a respite service; as I can only come in a few hours per week. I receive manipulation but I don't have to give it to that, either. He is in charge
of my mother's healthcare decisions (all not to keen on all of them) but I set my boundaries, too. Its a job and he choose to be in control, not me.

I know the feeling. I am the sole caregiver for my parents. People don't "get it". Those kids they are referring to ARE learning. My mom is UN-learning. I tell her 100 times a day (easily) to stop pulling her oxygen tubing. She ends up with a big pile that we all trip on, including her. She twists it and crimps it. 2 seconds later after telling her not to, and why not to, she is doing it again. I repeat and repeat and even though she seems to get it when I say it, she forgets 2 seconds later. It is EVERYTHING we do all day that way. "Please don't pull your diaper up until i have washed you..." "Ok." 2 seconds later.."Please don't pull your diaper up until i have washed you..." "Ok." Sometimes I laugh, some times I cry, sometimes I want to rip my hair out!! Yep, until they have been there WITH a LOVED ONE, they will never know. I worked in Geriatrics for years, worked in the locked units, etc. Nothing prepares you for doing with your own parents! I admitted to myself I don't have a mother any more. I have a woman who I love despite driving me crazy, but my mom is gone. That is something that people don't get.

I hate it when you run into someone you know... they mean well... "how are your parents?" I know they don't mean harm, but I just say, "about the same" because I know they don't want to hear how they REALLY are.... and to really get it they would have to LIVE her for a month... only then would they start to get it. I have siblings, but they DON'T get it... and they hate me for this???

I completely get what you are saying. I am afraid of what happens when this is done. My siblings won't help me get onto MY feet. I have lost my house, job, touch with reality!! I have my car. I don't know where I will go, or what I will do. I have put everything on hold to care for my parents. I thank God that I can trust him to take care of me, cause no one else will.

It is hard to not be frustrated when some family members are so rudely intrusive so frequently, and so manipulative. The "poor me, she's picking on me" victimization is one of the ploys to fill the black hole of neediness by encouraging sympathy and support from others who have similar agendas.