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Not to be redundant but I'm the primary caregiver for my mom with adv PD. I moved in to help her when it was only moderate PD. Now she requires much more care and supervision. I coudlnt' find a job when I moved here (one that would support me) so mom took over my med/dental and room and board. Sounds nice but the b side of that is that I have no life and am under her thumb. Being under the thumb of PD patient who is losing cognitive abilities but still in charge of the $$$. I haven't seen my bf since Christmas. We have been maintiang a LDR for almost 5 yrs. Was supposed to get together with him in June but he landed in hospital in May and then the homecare person (another issue) landed in the hospital right after that. Now that i'm trying to make plans mom has decided that since the homecare person we have 2X a wk for 4 hrs has a sleep disorder and needs a CPAC mask and can't do evenings or overnights -- that I'm just going to have to deal with the fact. I say the fact is that we need others for homecare than one person who needs to be in bed by 7 p.m. Mom informed me that this is not important to her and that the homecare if for her not me and so what if I can't do things in the evening or have a weekend to myself. She feels that she can't do a lot of the things that she would like to do either so I should stop being a pouty baby. I AM AT MY WITS END. I do not think I'm asking for a lot esp. since mom has LTC ins that pays 80%. One of my friends told me to just tell her what weekend I'm leaving and leave her the home care agency phone number and have her deal with and walk out the door. I can't just abandon her leaving her siting in her piss and crap just because she's demented AND stubborn. Besides I think the authorities would be called on me. I told my mom I dont' see why this has to be such bway production esp. since I'm here 99.9% of the time. I'm glad mom likes her caregiver that's here for 8 hrs a week but we need more? I've tried to be super sweet about it and I've gone off like a roman candle about it but I still reach the same destination -- NOWHERSVILLE. HELP!

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One thing that people need to think about, because this is what happened in our case, is what happens if the care taker dies? Caring for my Mother contributed to my sisters death at age 69. You are not indestructible.

You say that you can't leave and let the chips fall where they may, but if you die - that is exactly what is going to happen. I would offer one more time to get Mom set up where she needs to be and then, leave. I know it sounds bad, but I have been through a little bit of what you are saying. My Mother could keep my other sister, age 74, from even going out to lunch. 'What if someone comes to the door?" Aack. It makes me mad to even think of the control issues Mother exerted.
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Your mom is unable to make the decision, you have to. Find a place for her to live. Explain in whatever creative way you can think of...it's temporary, you have a 'project' you need to work on...whatever. Then re-establish a life for yourself. Get a job. What will you do when she's gone? Do it now.
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call your local Area Agency on Aging they should be able to help you... I do this for folks all the time... I know that statistically 60 % of caregivers will predecease their loved one... YOU have to take care of you! Don't let her make you feel guilty..
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Your mother sounds abusive to me!
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Please take care of yourself! Your mother is stealing your life from you and you are not obligated to let that happen.
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This sounds like a horrible situation and one very difficult to give advice in...but I've gone thru something pretty similar--can you possibly call the non-emergency # of the Fire Dept in your city/town/suburb, ask to speak to the paramedics, and ask their advice?

Dad (93 2/dementia) got combative with my husband, daughter (19) & I and locked us out of the house last summer. I called the non-emergency # of the Fire Dept in our suburb & spoke w/paramedics, who empathetically (thank GOD for their kindness) came to the house, got him to open the door by continually ringing the doorbell and calling him on the home telephone (which has no answering machine hooked up to it and so it will ring continually) and:

They explained to him calmly that what he was doing was so very counterproductive to his well-being that if he continued to not allow us, his caregivers, into his home (where we now lived 24/7, by mutual consent) that he would be forced to live with his older daughter, sole POA-holder, in her home.

Dad remembered from previous experience of living w/older daughter, who works long hours, lives 15-16 miles away from his house & cannot quit her job to be with him continually, as the 3 of us have managed to be, to be an unhappy arrangement for him.

There was no abuse or neglect by my sister when dad lived with her, quite the contrary: she was pushed to the breaking point. Dad was the one who decided, quite independently, that he wanted to live in his house. After being abusive to me the very first day I simply left...and then dad realized that he needed LOTS of care from someone on a continual basis if he wanted to stay here.

I then had my sister, and one of his nieces speak to him on the telephone, calmly explaining how much he needed us, and to STOP THIS ABUSE TO US, who were being so good to HIM. It sunk in.

OK. If you can't get the paramedics to do this, how about other resources free in the area where you live? Your village/city hall? You won't know until you check it out. I know this is time consuming to do when you are at your wits end (I totally & completely understand what you are experiencing) but summon up all of your emotional reserves and keep telling yourself "I can do this!" and you WILL.

I apologize for the ridiculous length of this. Being at your wit's end is very, very scary and it is difficult to reach out to outsiders...but you can! I did it & still continue to do so! There is basically just hubby, daughter & I; I ended up losing the job I'd had; now have been home with him the most so I know how debilitating it can be when the abuse is continually heaped upon you.

May you find the assistance you need SOON, stay strong, and come out of this feeling stronger, lucid, happier and with some sense that you are NOT ALONE. Many hugs to you!!!
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You poor thing! You are in a horrible situation and you need out! I am caring for my mother with dementia, who is not a nice person to begin with, so I can relate. You need to calmly and firmly tell her you are not working anymore on weekends. YOU call home health care and schedule them for the weekends. You may need to call HSS or her doctor and you may have to have her sent to a home. There is help. But you must quit taking this on yourself. And you can. You may have to tell your mother that you still have a life to live. So she can either agree to getting you much more help, or you are leaving. I know you are not really in a situation to leave, but tell her you have found a great job and are moving out. Are you her POA? Do you have any control of her funds? Sounds like you need to, if not. If she has dementia she cannot be in any position to take care of her finances. God Bless you and keep us posted.
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YOU need help!!!!! Contact all agencies, doctors, County Welfare, etc. until you find some.
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Start by going out for a few hours at a time. Leave her a snack and a drink at the bed or chair side and make sure she is clean and dry before you leave. After all that is done tell her you will be going out and when you will be back. She does not need to know what you are going to do. The first few times only go for a short period but gradually increase the time and extend it to over a time when she usually wants a meal. Eat out your self so you return feeling really refreshed and she on the other hand is late for dinner and sitting in a wet diaper. Keep your cool, get her cleaned up and then cook her a nice meal. When she has calmed down tell her this need not happen if she would hire enough caregivers to cover your absence and you are not giving up your outings. In future you can tell her you will notify her a couple of days prior so she can hire someone for that period. Contact public health, they may be able to help. You can talk to her Dr without her permission. He just can't tell you anything with out her permission. good luck it takes courage to stand up to a parent but you have rights too.
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I tried to get my sisters to stand up to Mother, but I think at least one of them was co-dependent on mom. If you are going to go out, you need to leave your cell phone in the house, so when your Mother calls it, it will just ring in her house. My sister would answer the phone constantly when she was out. Well, Mother outlived her. Go figure.
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Veronica91 has a great suggestion. What makes it great is that it's a PLAN. I find with my Dad that when I'm not reacting 'in the moment', things always turn out better. And, if I keep information scant (like Veronica's suggestion to just say you must go out, not where you're going and how long you'll be there) things work out better. There are certain reasons (excuses) my Dad respects more than others and those are the ones I highlight (having to do with the kids or work).

Sadly, it's like reasoning with a 2 year old, you have to make it make sense FOR THEM, not just make sense. The self-focus in someone with dementia is very much like a toddler and if I keep that in mind, and leave a lot of things un-negotiable (and refuse to argue about them), things work out pretty well.
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This is very tough situation and needs to be thought out well in advance before you say anything to you mother. First, are there any other siblings or family members that you can talk with and tell them the situation so they can become your allies. This is a battle that you can't wage alone. Remember, that mom really can't make the same decision that she once did and thank goodness that she has the money to pay for her care--most situations do not have money. So you at least have one positive thing to your advantage. If there are family members, then I would seek their counsel and ask them for their help. Once you have secured their assitance and you have a PLAN--a PLAN not just a couple of ideas, then you try to talk to your mother and HOPE that reason will be there to help. But, I hate to say that I don't think it will be that easy. And if that is the case, they you will have to seek legal advice on how to proceed if you go the tough course. I know that this course will bring out the worst of your mother and she will try to put a guilt trip on you. The other alternative and really a must as you do need to be able to care financially for youself--that could get you off the hook. Maybe?? But it sounds like you and your mother both depend upon each other and that sometimes is not good, especially when she needs to so much care and as time goes one, she will need even more. SO NOW IS THE TIME TO SET A PLAN--don't wait until there is a crisis--make this an opportunity. I would definitely look to day care so that she is taken care of during the day and can give you some respite--night time is another story--but as the saying goes, there is an elephant in the room and he needs to go, so let's do it by eating leg at a time. You have lots to do so you are on the right track by asking others and seeking advice--now that you have all of that good advice, it is time to start the really hard work--taking care of yourself and then your mom in that order. You are main member of this team--do keep in touch and let us know what you decide, because this is a situation that we hear about and we would like to see your course of action. Be strong because you are a good daughter and will do the right thing.
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It sounds like you are in a very tough situation but you must draw the line clearly. If you are to stay and care for her, you need to set limits and clearly state what they are. One of those limits is that she needs proper care when you are not there or else you cannot continue to be a part of her care plan. You also must get her to sign a power of attorney before she is not competent to do so. The fact that she has insurance coverage that she is not using is a signal that there is something wrong. Best of luck to you. To help her you need to be strong, which means giving yourself enough respite and drawing lines for her when she is unable to do so for herself.
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My father is control freak and will never let loose of the check book. I am not going to fight him about it.
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How can your Mom handle her own money if she's not able to get out independently and do banking etc? It sounds like you really do need to get the POA or if she's not willing or able to do that at this point, then it would be getting guardianship. Those who are suggesting you just arrange the home health care, are right...it needs to be done, but you are in a pickle if she controls the money and will then just decide not to pay the bill when it comes! Also, you can involve Adult Protective Services to evaluate your Mom's situation, without it making you look bad. You simply say, you've been there and you are helping her, but she will not spend her money on things she needs, and you have a reasonable right to NOT be working for her 24/7. I would say that you have no requirement to be caring for her more than 40 hours a week, just like a regular job would be, especially when you are not being paid (at least it seems like you are just living in and not getting a salary from her) for your time helping her. Reasonable is reasonable. APS would evaluate and they could get agencies involved who would help arrange POA or suggest that she should not even be in her own home...but they would certainly evaluate safety...without judging that YOU are the one at fault.
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This is a tough situation. I hear a lot of my situation in there. But, luckily, My Mother still has executive function to a good degree, and realized one day that, since she's in the hospital, that someone has to make out checks and pay the bills while she's away. That was the day that she let go of the power of the check book and had me take over, telling me to get checks made with both our names on them. I thought I'd have a big issue about this since she too is a major control freak and has always tried to use (didn't work as I got older) the power of money to control those around her. I learned very early on that I need to be financially independent enough to be able to say toodle-loo and walk out the door. That broke her control over me. I did just that. After that she grew some respect for me. In your case, you may have to take another approach, but you must get control of the finances before she gets any worse or you could have a pile of troubles trying to handle things.
You must set limits too and let her know that you need more respite or you will get sick and can care for no one. The statistics are depressing about how many caretakers die before the person they are taking care of. Shocking, actually. I intend to not be one of those who die first. You shouldn't be either.
I get the impression that your Mom thinks that you should be just as restricted in life as she is and have no fun, no respite, etc. That's 100% selfish and unreasonable and something a dementia patient would say. Do not accept that. You have the right, the necessity, and the duty to have enough time off to take care of yourself, emotionally, physically, spiritually, etc. I too am working on this issue, and IF my mother comes back home to live with me after rehab, I'm telling her that, if you want to come home, you will have to hire healthcare aides to come in and give me time off to take care of my needs. It would be much less expensive than paying for assisted care or a nursing home, which is her other option. I know which she will choose.
You said that your mother has long term care insurance. That's your ticket to walk out the door and let someone else deal with her mess. If she finds herself sitting in her own piss, it sounds as though she has enough awareness to figure out that her behavior is what caused that to happen. Take a walk and take care of yourself. If you're acting as her caregiver, there will be job openings somewhere for some one else who needs a caregiver. That's just a possible idea for finding work to pay your own way.
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Call the nearest Visiting Nurses Association and get a healthy person to be Mom's caregiver. SAVE YOURSELF, get some sleep, or end up in the ER yourself.
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Veronica91: I think your approach to this was really well thought out and pretty well said. The only thing I am concerned about is what happens if she falls or is injured while he is gone. On another thread on this site there was a very long discussion on caregivers leaving the ill person alone and if they tried to get up or do something on their own and were injured, the caregiver could and most likely would be prosecuted for "willful neglect of a senior." One person called to speak to an Alzheimer agency and she told them that she would leave her mother alone while she ran to the store, the next day, Elder Protective Services was sitting on her door step and it opened a very big bag of worms. She was left with a paper that stated what I said above and told her she could spend up to 7 years in prison!

So, if you decide to do this, be aware of what the ramifications could be.

Does you Mom have a will or a Trust or has she given her POA to you or anyone else? Your Mom does not sound like she is truly mentally competent to make the decision to hire additional help. She sounds like she can argue with you real well but she is not realistic in the toll this is taking on you. You need to have a conversation with her doctor or social worker, basically anyone who will listen and see if they can reassess her situation and yours and see if she can qualify for additional help. Tell the doctor you cannot continue at this pace yourself or you will break and she will have no help. You need an outside third party on your side to confront your mother and TELL HER WHAT NEEDS TO HAPPEN AND WHAT WILL BE HAPPENING.

Another thread gave a statistic and I do not know where it came from but it stated that 30% of caregivers die BEFORE the person they are caring for! I truly believe it is stress and fatigue and the inability to care for our personal needs.

It was very hard for me to break that ceiling of Mom ruling the roost, with dementia. She was not happy when I took over the reigns but you cannot continue to be led by an incompetent leader.....YOU HAVE TO BECOME THE LEADER!

You do need to obtain POA if she is still mentally competent enough to give it to you, so you can make the financial decisions for her. Just remember, her money is to be spent on HER needs so you have to be a good steward of her money. It does not mean you pay for your weekend trips out of her money.

God Bless you and your mother on this journey!
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Yes, please contact your local office for the aging. They have social workers who can serve as mediators. Also, if the doctor gives the okay for home health, there may be access to a case manage and social worker, too.
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Thank you so much for your comments. Just to clarify -- mom has the $$ but I've had to take over doing the checkbook and writing of the bills. The game plan was 5 yrs ago was I was going to get a job and mom would have care (5 yrs ago she wasn't in Stage 4 PD maybe only end of Stage 2). Well, what's that saying about if you want to make God laugh, tell him your plans. I did find work but not in my field and it's not enough to live in. Then mom broke her hip 3 yrs ago and the PD decline accelerated. Now dementia is starting to rear its ugly head. Not easy. but I am going to be insistent more about home care and if she doesn't like it too bad. The worse she gets the moreI'll have to be in charge anyway. She's pissed about me 'taking over". Like this was my life goal -- to take over for my mother and have NO LIFE. HA HA HAHA BTW, I am an only child. Have a cousin who I confide in via e-mail but she's dealing with her dad in nursing home. She thinks mom (her aunt) belongs in a NH too but she would be too scared to tell her. What a pickle us caregivers are in sometimes right?
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What about one of those button systems? My in-laws have one and it makes me feel a lot better. You have to get out and recharge.
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