I spent a great deal of time crying tonight... why can't family understand or be supportive?
I have been living with my parents {Dad: 87, getting slow and forgetful... mild confusion that comes and goes, very stubborn, difficult at times, etc... Mom: 81, Severe Dementia, (don't know who I am 99% of the time, or my dad, lives in a fictional world, and not always a happy one!) O2, incontinent, diabetes, severe scoliosis, ambulation problems, swallowing problems, thickened liquids, needs to be watched closely at meals or she will stuff 1/2 the plate of food in her mouth at once... diverticulitis, sun downers and the list goes on....} for 1 1/2 years now.
Background: I worked as a geriatric nurse for over a decade, but the hours didn't work for my kids, so I started a in home dog grooming business...For years I have brought and cooked supper for my parents every Sunday and did all their grocery shopping, errands, etc, while my 4 siblings (I am the youngest of 5) have had almost nothing to do with them. I knew SOME of their problems from the weekly or more visits. With the economy, I ended up loosing my house and business. I stayed with my parents for a "few days" until I could find a rental. Well, after getting into the house, I realized just how bad off they were (the things you don't see from the outside) and knew then that I couldn't leave them. my mom no longer knows who I am most of the time. Typical dementia, some days better than others. needs constant supervision. My dad can't tolerate her for more that a little while at a time. I worked at the nursing homes here and know that ISN'T an option.
My one brother will come over and help my dad with "projects" fixing things and such but my other 2 sisters only come for short "visits" enough to clear their conscience. Barely. Definitely not long enough to see the whole picture. They refuse to help toileting (I guess they are way to good for that.) or any cares while they are here.
Tonight my brother informed me that my 2 sisters have been talking, and they think MY MOM??? wants my herself and dad to move to the city where my oldest sister lives and get an apartment where they can LIVE ALONE and she could "check in on them once a week or so" ??? (She couldn't even put together a complete thought like that...)
My other sister put a nasty note on my face book about "Just goes to show you some people will run home to "mommy and daddy" no matter how old they are!
They think that I am just "Sponging" off my parents and that they would be better off without me. ??? Seriously? I have given up my life, my freedom, my sanity, to take care of our parents. I know for a fact that if I hadn't moved in when I did, they would both be gone now. They were both at wits end, but hiding it the best they could. Neither sleeping. My mom a danger to herself and my dad. Started fires in the kitchen 2 times in a matter of days. Falls.
I don't get any money doing this. I am going BACKWARDS. I am not getting any younger, and I am giving up my productive years to do this. I am broken hearted. I am burned out, but they won't even stay for 1/2 hour for me to get away. Nobody understands what I do. The sacrifice. then to think I am taking advantage of them?? I don't know how to handle this. I know hiring someone would cost a great deal more than ME living here.
Silly me, i would like some acknowledgement for my efforts, but instead I get only judgement on EVERYTHING I do. I know this isn't uncommon, but I needed to vent to someone who would have a clue of what I am talking about and dealing with. I am not expecting "answers" but hopefully some understanding and support. I don't think I could take any more right now. :(
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I feel for you. My mom and dad live alone for now. They are 91 and 88 both with
dementia. My brother expects my dad to still drive, take care of the yard and buy their own groceries. He expects my mom to cook. She has serious dementia and early alzheimers and only knows how to warm up food. Some times when I leave prepared food for her in the fridge she can't even locate it when I call her.
My brother however, controls their checking account so I cannot have funds to provide food or a caregiver to come in and service them. I know it will be only a matter of time before one becomes incapacitated to the point where they cannot
take care of themselves any more. My brother does not speak to me. Both my brother and I work though I am closer to retirement. I feel it is difficult for me to take care of them should I rush my retirement under conditions where my brother is handling all the purse strings and legal and financial power.(especially when he is narcarsistic, arrogant and controlling). I sing Karaoke at a lot of really nice
assisted living facilities that take good care of seniors. The seniors love our bi monthly visits where we entertain them. They have activities like bingo and crafts and ots of socialization opportunities. My dad is very socialable and he'd love it there. Their clients are clean, well groomed and they have a beautiful dining room with nutritious foods. They also have medical personal for emergency and doctor visits. I am sure that parents would love to go there and their children can visit them on the weekends. However, the siblings have to be willing to dish out the monies (5-6K) per /per/mon.
Many are stingy about this and would rather have one sibling be the care taker
to save the inheritance for themselves rather than waste it away in some extended care facility. I myself would rather have my family member live in
comfort and safety. That is what they worked all their lives for.
There are a lot of loving family members on here caregiving their life away....we appear to all be feeling about the same negative feed back from family/parents.
Second...Darcy, bless you for your love to your parents!!!!! PLEASE know that you are NOT in this alone. There are a lot of caregivers here in your shoes. These are good answers, I too am going to have tocheck into Area on Aging for whatever assistance I can get for me and my parents.
Keep taking care of you...for your health and peace of mind...hugs to you!!!!!! Keep in touch.....newtothis.
or 2 off. I hate to say this to you but you won't get any help from family so just use your energy to find other resources. That helped me. Your doing a great job and you will be blessed from the man up above. Also there is nothing wrong with you living there and just ignore what they say. If their not part of the solution then they are part of the problem. You can also get paid for what you are doing through your parents income too. Just document everything.
God bless you for what you are doing
I am sorry if it sounded like as though you planned to abandon them
--that was NOT intended!
Others mentioned doing things that could be constrewed as that, and some caregivers get desperate enough to do those kinds of things.
Even for a day's break away.
Which could give other family members who are less than understanding, an edge to get nasty.
Words of support and advice are given both for the one who posts in need, and for those who "lurk" and never post, so sometimes answers cover more than necessary, for those.
Your ability to keep doing full time care-giving is very hard work; it needs and deserves to be supported and rewarded!
Anyone doing that needs all the advice and support they can get, to help cope, to keep from buckling under pressure.
But CAUTION against just leaving them alone at any time, or in a way that might be seen as neglect or abandonment.
You are a nurse. You didn't say what level of nurse.
If you are a Licensed LVN or RN, you know about laws re: patient abandonment.
You took on their care voluntarily. Therefore you took them as patients for which you are responsible.
HOWEVER,
You can get help and advice, usually free, from your local Area Agency on Aging.
All kinds of helps are available through them [or your area's group that does that]--but I think they are National in the USA.
1. there needs to be a POA, as soon as possible, while at least one parent has ability to sign it legally.
There are various kinds of POA's, to handle "everything" and handle "medical only", etc.
Your local Area Agency on Aging should be able to help with that, if you need free legal. I know WA State has whats called "NW Justice Project", to help those who are low income to get legal help.
2. Have a Social Worker come to the house [that is free], to evaluate the situation for real, and write up a case,
and perhaps give you an estimate of what it would cost someone to hire helpers to come in 24/7 to do all the tasks needed for their care, and the household, that you have been doing.
3. From that estimate, do the math for the hours
[document them on a calendar, for instance],
to show what it would cost your family to pay for your professional services for all the time you have been there caring for them.
Document everything!!!
By documenting everything you have been doing, and putting a realistic dollar value on it, it helps YOUR self-esteem, and, provides a legal paper trail to protect you, AND conveys to siblings what it will cost them no matter where the folks live. You might also provide estimates on what a nursing home costs to care for them, or an assisted living.
It is so sad when siblings behave like that. They certainly have their perspectives--but those opinions are based on lack of information.
AT this point, it will be tough to tell them "how things really are"
--they will just get worse attitudes, because they will defend their opinions to the death, because they formed those thoughts, and therefore refuse to hear what you say as real.
UNLESS AND UNTIL you can show them documents made by officials describing the circumstances, and telling them what their care will actually cost them, they will not believe it.
That is a common fact of life for caregivers, all too often.
We went thru that at our home; the dysfunctional siblings are entrenched in their opinions so deeply, they refused to hear anything, and it was all wrapped up in their personal feelings of entitlement to vindictive retaliation for real or imagined insults decades past, as well as on our Mom's mental illness-driven imaginings....it has resulted in our no longer voluntarily communicating with them, to protect ourselves.
It resulted in my mourning the loss of not just what was left of Mom, but loss of family as well, for several years, because there seemed nothing I could do to stop them doing as they did.
I pray you have better results, by taking good advice and getting all the helps you can find, such as above, and, getting medical and counseling helps for yourself, to help renew your spirits. You are a survivor, and have managed to make it this far.
As one nurse to another, the time to be proactive is NOW, for yourself, and for your parents!
why should u ask? u know she makes excuses not to-- so why not just say,
I am going out - ill be back soon- no need to explain- have your bag,keys,whatever u want to take with u ready before u tell her-
so my suggestion is tell her u r going out- dont ask--u dont need to explain- just go!
its just a thought-i have found thru my own problems with my brother-if i ask,it only gives him an out- if i dont ask but announce -
what can he do-besides complain but that happens anyway-so whats why not?
would your sisters just leave your parents alone?
siblings are so strange--
keep venting- i love this site-and the people are so real-they have been there-they know the deal-
so i will send u hugs and some good energy-
love k
2. Insist in a trial run for the evil sisters. Insist they care for Mom & Dad for a week while you disappear on respite break. .Let them change diapers, shower Mom when she has feces all over. Give them a reality check have them hand feed Mom. while keeping dad occupied etc
3.Make sure they know who pays for what and leave them the allocation whatever share your parents kick in. Make them shop for the week with Mom & Dad in tow
4.Ccomprehend the fact that they want Mom & Dad closer to them to ensure you're not stealing thei inheritance while providing 24x7 care for noyhing.
Who has tue POA. if you don't have one get one while Dad is still functional. offer a full accounting of parental assets. Get a letter from a case worker dealing the care Mom must receive and her incapability of independent living
I love to see their reaction if you were to say. " fine I'm out of here and leave the two piglet sisters saying " I should have been more careful in what I asked for. If they then want your help, quote them a daily rate.
Maybe a reality check will get them to realize the role of caregiver calls for the sacrifice of SELF and they'll smarten up
I went to our local Area on Aging once and met with the employee who was in charge of helping caregivers. I just wanted to know about a caregivers support groups, but when I had left, she had arranged for me to have 30 hours of in home help with my dad at only $1.20 per hour cost to me.
You need some help and you are not going to get it from your sisters. Accept this as the truth. It doesn't matter if it's fair or not, it's just a fact. So let it go because to keep reaching for their help will only add to your frustration.
I'm glad your dad reassured you and expressed some appreciation for all you've done for the past year and a half. Still, he can't just leave everything on your shoulders.
Please check into other resources for assistance. Stay in touch.
Cattails
No, I don't think he would willingly pay someone to help.
My sisters and I have a love/hate relationship. We can be close, and then they are against me. Back and forth. It is complicated. I am the youngest and
tend to get along better with the 2 of them than they do each other though. I am the submissive one who hates conflict and confrontation. They seem to thrive on it. This is one of the few times when they are on the same team though. A while back one of them told my dad that he should really be more appreciative of me though, as I put my life on hold to care for them... now this??? They both seem to see things through tainted lenses, but now they are feeding into each other apparently.
I am family is also leary of having a non family member here as they hired help for my grandparents... come to find out she loaded up her car everyday before she went home~ with their belongings!! My grandfather had a stroke, and she left him in a chair for a full day, in his own urine while she grabbed as much as she could take and then bailed. They had a lot of valuables in that house. Never heard from again. (Sadly I don't even know if they notified the police... my parents are weird about things like that.)
I asked my dad about it today... said that Todd (brother) gave me a heads up, and I thought I should do the same for him. He said "No way! We don't want that." And I told him that they thought my parents would be better off without me, he said " We couldn't do it without you." pretty much. That helped.
You can also check with your local Area on Aging and see what support is available for your parents. They might be able to help more than you think.
I'm wondering what your relationship was like with your sisters before you moved in with your folks. Was it touchy then or has that just happened in the last 18 months? Are your children living with you and your folks?
What you are doing is very stressful and exhausting. I hope you can get additional help.
Hugs, Cattails
Last year, my dad had a stroke and is now bedridden. I thought, with now 2 bedridden parents, that I would have help with the family. Nope! I asked and begged, threatened to walk out and suicide,etc..Still nope. All it did was get me so much angrier, more bitter, more resentful, more depress and suicidal. Like you, I wanted them to help me with the parents. It’s very difficult.
Your situation is so much worse than mine. Not only do you have to contend with the parents, but also with your sisters! Obviously, they haven't spent a whole day with the parents. Any possibility that the next time sis visits you, you can make an excuse to go out and leave sibling with parents for several hours? Maybe sis will learn the hard way the truth about the parents!
You're doing good so far with all that's happening. Vent all you want. It will help relieve all that anger and frustration so that you can start thinking of ways to protect the parents from moving away. Take care!
My heart goes out to you. You are not alone and your situation is far from uncommon, but that does not make it hurt any less.
Hang in there!