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debigm423 Posted March 2008

Frustrated Daughter!!!

My name is Debbie, my parents have a 24/7 caregiver! My Mom is 91, blind, 80% deaf, has Stage 2 colin cancer and hard headed. My dad has sever dimentia, Parkinson's and that is the main reason they have 24/7 care. There are so many problems. First, my Mom doesn't like the caregiver, she is from Ghana and she can't understand her. She takes (the caregiver) care of my Dad's toileting, bathing, puts him to bed, gets him up and dressed, etc., I feed him his lunch and sometimes breakfast. I go there every day and bring their food, make their food, take them to dr. appts., do housework, pay bills and take care of their finances, etc. I'm there about 3 hours a day. My Mom has nothing much good to say to me, my Dad is pitiful, has to wear diapers, be fed, his hands don't work. My mom argues with him, if he says something that is absolutely not true. Makes him mad. The girl there can't cook! I have to put their dinner on plates and give specific instructions on what to heat, and what not. She once microwaved an egg salad sandwich!!! She's been spoken to more than once about scrubbing my dad to hard, his skin is thin. My mom has me read her bank statement every day because she can't remember and is sure they'll be living under a bridge in a year. I'm not getting any help at all from my brother!! Okay, I've bitched enough, any suggestions?

Jaleyn Apr 2008
Hi howardroark I am not sure if your question was directed at me however I will jump it... and give you my words of wisdom, HA HA!!! Actually I have considerable experience with respite care. It is a very real part of what I do. I would encourage you to contact the Area Agency on Aging where you live. They can be a valuable resource for you. They can help you find services in your area or may even have folks to help you. My heart goes out to your Mom, please believe me when I tell you this if I were close by I would help her. Is there a home health care agency in your community either private or through the hospital??? If so they may know of someone who is able to do respite with your Father for your Mother. The average caregiver works over 110 hrs a week and my guess would be that your Mother is not a young lady, right??? Another thought is try some of the local nursing homes they will often do even overnight respite. I am sure that may not be everyones first choice but it can be a helpful solution. We have some really nice nursing homes in our area that do this. The respite program I am the director of is for folks with Alzheimer's disease. I do wish you well and pray that God will bless your efforts... I will say a prayer for you folks.. take care J

howardroark Apr 2008
Any leads on respite care. My mom has been caring for my dad for nearly 20 years after a devistating stroke. I have looked EVERYWHERE for respite care - just for her to have a night off would cost $100 - Her only option is me and time away from my family. I guess that is what family is about but sometimes I look at my friends and what they complain about - they have no idea. . .

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Jaleyn Apr 2008
Hi Nana I am confused about time. I was glad to hear from you again... Kids are wonderful. We actually have 5 now 3 who I gave birth to and two that we were given to us by our sons. Our oldest two boys 30 and almost 28 are married and so we have beautiful and wonderful daughters in love. I am happy to have them and know that the boys are happy. God is good to us even when we don't deserve it. I hope things are well for you I have had a busy but productive day. I actually even baked some cookies, I love to bake. The summer before my husband and I were married I baked at a bible camp in northern Minnesota. take care Nana your friend in Iowa J

nana Apr 2008
Jaleyn My son is 14 and he can be very helpful around the house. I am thankful that he helps when I ask Him. Yes, God put us here to care for one another, I just feel strained sometimes, with my health problems and all, I can't work as much as I would like to, it is very frustrating being 40 and laden with health problems, I want to so much help others and when I can't I am angry with myself and get frustrated easily with those I care for when they become very demanding. I am glad you have a good support system at home. God Bless Nana

Jaleyn Apr 2008
Thank you Nana for your kind words... I am okay hon really, my husband is wonderful and I have a son at home who is very helpful too... He is 19 and in college and a really great kid , if I do say so myself... The Lord knows what we stand in need of and I think he put us here to care for one another... take care it was a joy to chat with you... J

nana Apr 2008
Jaleyn I liked the comment about the dog! Funny but true! You don't seem to have the help you need, taking care of your parents, how awful not to have your sibling to help! They just don't understand what it is like until they get in it themselves! I feel for you. My prayers are with you, I pray you get the support you need too. I am glad I found this site I sure needed some refreshing words and a little backup myself, I guess I needed to be reafirmed that what I said and was doing was right. God knows I try hard to please God, sometimes though we need reinforcement from outsiders out there who go through the same things. Many blessings your way glad to have talked to you today, maybe we will talk again.
Signing off, nana from Ohio

Jaleyn Apr 2008
I agree with you Nana, It is like when you are raising your children, sometimes it is easier to do it for them but that teaches them nothing. I had a little Grandma from Scotland and she always said, Lassie why keep a dog and bark yourself... kinda funny but wise... NO NO I do not think you were harsh... We have to care for ourselves too...take care nana , J

nana Apr 2008
Jaleyn I reminded them both that nursing homes are for those who can no longer do for themselves. I told them both that. I told them I was a home health aide mean't to assist them with whatever they needed me to assist them with, not their own personal slave to order around and be disrespected. You were not harsh at all! I agree with you, with what you said. The aide service out there is meant to assist and encourage those in their homes to help themselves as much as possible, but they abuse it. I will no longer be abused by them or anyone, that may seem harsh but I believe it is for their own good, if they don't hear the truth how can they ever have any quality of their life? How can they ever have any independence instead of dependence? It is hard to get someone out of that rut of dependence, when they have been taken care of when they are sick and get better, which they have and are stable. I am doing it for their own good, else they might as well just curl up and die, that sounds harsh, but if they are ever to have any self respect or respect for anyone else how could I not tell them that?
nana

Jaleyn Apr 2008
Your are very welcome.... I hope you didn't think I was being to harsh but lets get real... sometimes we just have to stand up for ourselves. My Dad had a heart attack oh probably 11 yrs ago... My sister from Seattle, who never comes home (we live in Iowa) was trying to tell me what to do. I was like HELL-O I am here taking care of both our parents don't you dare presume to tell me what to do. take care Nana God Bless, J.

nana Apr 2008
thanks jaleyn I had to get alot off my chest I will pray for you too. I think I did the right thing did you read all three of my comments? I tell you it took alot to do it. I have always been a softie at heart, thought maybe I had to do everything they ever wanted but it made me crazy! Much better now, though. Thanks for commenting to me. nana

Jaleyn Apr 2008
No one should be made to feel like dirt!!!! that is just uncalled for and VERY unfair... Perhaps it is time to remind them that there are nursing homes that they could go to if they are that unhappy at home....I don't know that it is always appropriate to as it were threaten someone, however it does not seem to me that your being treated appropriately either.... just my two cents worth(perhaps not worth that)... take care J

nana Apr 2008
also mqflowers I told my friend Terry she took advantage of me she wants me to do everything saying she is too sick to do it herself, I know better, I see what she does, if she wants to go somewhere she gets in her car and goes! She purposely thinks of things to do to get me to be around 24/7. I told her, i also have to take care of my own health and my son, being a single parent and all. I think she gets lonely being by herself and all. Her family are all old and her brother lives far away. he doesn't have much use for her. I talk to her everyday and spend time with her when I can, I do like her and am her friend, but she makes it known and tries to manipulate me to being around 24/7 which is smothering me. I feel as if she wants me to be her spouse! Yuck! She once was in a gay relationship and still acts that way, I told her I am not that way, says she isn't that way either, but she sometimes gives me the creeps. I take her to church with me, but make her drive sunday mornings. I drive at night cause she has cataracts small ones. Says she can't drive at night. Thanks for the encouragement I definitely needed it. That book you guys have been talking about, I got to get it. Lots of info I ready today that really helped. Thanks mg and cindy

nana

nana Apr 2008
well mqflowers I was getting paid and quit for a while cause I was burned out and overwhelmed. Then I told the company I worked through to hire me back on as a backup only for them and the other client that is in my area. I couldn't handle being their primary caregivers it just about sent me to the loony bin. I have a few issues with depression and years ago was on medication. I had to go back on my meds for a while now I am off and doing much better. I finally told them both that they had to do for theirselves and if they got nasty with me and nitpicked with me about their care, i was going to walk out on them. i meant it too, sick or not noone has the right to treat me with such disdain and scream at me like that, I may be made out of dirt but I am not their carpet to walk on. I did everything they ever asked and I think i created some monsters but those monster are being brought back to being human slowly. nana

nana Apr 2008
well mqflowers that info sure helped thanks!

nana

Jaleyn Apr 2008
I have been a caregiver all my life, honestly. I love my family..... however I truly would not let someone even my Father and Mother talk mean and unkind to me. People only do to us what we let them. Long ago when I was caring for my Grandfather (who I always called Poppa) he became upset grabbed my arm and was twisting it. I was so hurt emotionally and even physically somewhat that I just looked at him and said Poppa you are hurting me. He came back to himself and felt badly that he had hurt me. I would encourage you to speak up for yourself and tell them you are trying to help them. I am sure without question they do not want so called strangers from some homecare agency taking care of them... Maybe you need to find someone from your church or their church or even a neighbor who would come for a short time. Look for a respite center or a in home respite care worker. Check to see if you have an Area Agency on Aging in your community they are good resources of information. Then go and get your hair done, read a book, watch a movie, take a nap or anything that you would enjoy doing for you.... take care and God Bless J.

shadyldy131 Apr 2008
i am another frustrated daughter! my mom is driving me nuts and i can not do anything about it. I am THE only caregiver, and i am jealous of those of you who can afford 24/7 care. just put yourself in my and cindi's shoes for a while, and you wouldnt care if the caregiver spoke urdu, as long as you didnt have to take care of them yourself.
Donna

cindi Apr 2008
Mq,
that is excellent advice! I do something like that myself and it does work. You do have to do it many times before they get it and sometimes they forget so you have to remind them. What you wrote clarifies it in simple terms. Sounds like that book is very good. I might have to get it. I sent your information to some other ladies here. They are under a different category. Thanks so much.

Cindi

mqflowers Apr 2008
Thank you Cindi. I needed that confirmation.

I just saw a book entitled "Elder Rage" by Jacqueline Marcell on another post. She said that we have to start start setting some boundaries and use behavior modification, which will be very effective.

She said that we first need the “Jacqueline Marcell Emotional Shield.” Put it on every day and then don’t let anything that they say bother you. Allow all of the negativity to bounce right off you. Then after they make a nasty comment, or do something out of line, say calmly, “Oh Mom or Dad, I love you, but that wasn’t very nice to say. You know, when you are ready to talk nicely to me—I’ll be back”. And then just leave the room. No arguing, no yelling, no attitude, just set your boundary EVERY time.

If you do this enough, they'll start to get it. And then most importantly, when they are being nice to you, be sure to acknowledge it, give compliments, throw in a gentle touch, hug or kiss—and you will be sure to get lots more of that behavior.

cindi Apr 2008
Mq, read your earlier post. Yes, you are in a bad position. Especially if your mother is being influenced by your brother and his wife. They might figure that they are the ones who take care of her seeing they live there with her. You are the big bad wolf with the money strings. Your own mother might also see you being in the "power position" and agree with your brother. Could she be put into an assisted living facility or a private home where they board and care for the elderly? This way brother couldn't live with her and would have to be self responsible and all the money could go to your mother's care. If this can't be or won't be done then you are responsible for your mother's money, care and future. Need to stand strong. Afterall if all the money is gone who do you think will be caring for your mother...not your brother for sure.

Good Luck!
Cindi

mqflowers Apr 2008
Nana, you have every right to feel the way that you do. You are a human being and must be respected as such. They are taking you for granted and taking your kindness as a weakness.

Of course your child comes first, there should be no question about that. Don't allow them to put you in a guilt mode.

You must put a stop to this - take action. You'll need to step back and only do when it's absolutely necessary for you to do so.

Are you being paid to be their caregiver? Even so, you should still be treated with respect and allow them to do the things that they are capable of doing on their own. If you're not being paid, and if they have Medicare or any other supplemental insurance, you need to see about getting paid.

nana Apr 2008
Looking for support outthere. Am a part time in home caregiver. Why do your people you work for, don't seem to care if you are sick? Don't they know we are human beings and have needs too? What do you do and how do you handle this? I am going nuts dealing with it! I am on disability and provide in home care as a backup for my cousin, and friend who is disabled, but able bodied enough to feed theirselves and dress theirselves, yet they dote on me to do everything! Like pick up a tissue if they drop it, or drop what I may be doing at home, just to take them to the store or doctor! Like my friend won't drive her car to her appointments, expects me too. Gets mad if I don't. My cousin, she has no car, uses public transportation if I can't take her. Gets mad if I don' t have the gas to take her. I say she should use public transportation unless it's at a last minute thing or if she is sick and needs to go right away. I don't have a problem with that. Other wise if my son has a appointment or band concert or something she expects me to do for her first then him, I feel my son comes first unless my cousin is sick and needs to go to the doctor or hospital, of course I would take her. I have trouble keeping my life balanced between all this! Am I wrong to feel this way! If I am someone please tell me! I love my cousin and my friend, but I feel used and abused so much! Help!

mqflowers Apr 2008
I am extremely hurt, bitter, angry and resentful. My mother has been talking bad about me to her friends. It's so hurtful and I know that I need to move on, as I am doing what's best for her. My brother spent $30,000 of her money in a one month period, with nothing to show for it. I now have her other monies protected and I pay her bills. She gets $1100 from SSI every month and should be able to live off of that since she doesn't have a mortgage payment. My brother and his wife lives with her in her house and they are leaches. They don't have any rent to pay, but yet can't pay her property taxes that's due every six month. My brother is a drug addict and the seeds that my Mom has planted in him have grown to be nothing but garbage.

They are financially abusing her, but I won't allow her to get to the other money that I have in a savings account for her. Therefore, I am the villan.

I know that I have to die to self, in order for God to heal me and in order for me not to take this personal. It's so very hard and I am trying to get on track with this.

Family is something else and can be your worse nightmare.

Jaleyn Apr 2008
Yes please help your sister if even for a short time a few days or a week. Respite care is available in most areas too... Check and see what there is in your area. Caring for an aging loved one is difficult emotionally and physically. Let us know how things are going. take care J

mqflowers Apr 2008
Not even between your parents retirement and SSA?

thegarvins Apr 2008
yeah - for $250.00 a day! none of us can afford that.

mqflowers Apr 2008
What city and county does your sister live in? There must be something that can be done.

thegarvins Apr 2008
nope - my sister has exhausted all avenues. besides, i think she needs more than a break. she needs her life back. she is going crazy.

mqflowers Apr 2008
Thegarvins, I am sure that there are health home care agencies that work the area that can come out and cook, clean, care for your parents. This will give your sister a break.

thegarvins Apr 2008
thank you for the advice. the weekly thing wouldn't work. they live 5 hours away and they won't travel. they have a housecleaning service come in once a week. but, my sister is isolated down there. literally! they live on 5 acres in nowhere land.

mqflowers Apr 2008
Thegarvins, I would advise you to stop the feet dragging, take your sister to dinner and let her know that you are willing to help. Make out a plan where, maybe you can get your parents one week and she have the the other week. Or help her in finding someone to come into the home to take some of the burden off. If she does't want them to move next door to you, then that may be the only alternative until she's comfortable with the move.

We must take action, as talk is cheap and we need to add more value to our talking by doing it.

I'll be praying for you.

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