Anyone a caregiver for a not-so-elderly parent?

[makhro82]

My mother has MS and has lived with DH and I for the last six years and I'm fed up to the point where I want her to leave. Before she moved in with us we already didn't have the best relationship. My father was an alcoholic who sometimes was abusive and I don't think my mom took enough accountability for how her choices to stay with him affected our family. Despite that craziness I still love and care for both of my parents but my mother is so rude and disrespectful that many times I can't deal. She complains about me and DH about everything and to anyone who will listen. She tells them how she pays our mortgage which is not true. She does pay "rent" and this is because when she first moved with us we were living in a one bedroom apartment with 2 cats and when she came with her cat we had to move to a two bedroom so she paid the difference in rent. Eventually we moved because three cats and three adults in one apartment does not work. She still pays rent but we pay for all the utilities, food, her clothes, toiletries, and when her medical expenses exceed her actual finances so her rent really doesn't get her that far. Our living situation is making our relationship even more contentious but she can't afford to live on her own and her cognitive and physical abilities make that implausible too. She's too young for a nursing home plus the facilities that social security would pay for are horrible. I don't know what else I can do. I'm 31 so not yet at the peak of my career to support two households. I have zero kids because she's my child. It causes issues in my relationship and my stress and anxiety level is through the roof.

 

[monarch64]

Makro, you have every right to vent, and I'm glad you did, but you GOTTA GET SOME HELP. The caretaker is the most neglected person involved, and you sound like you're at your wits' end. Please speak to a counselor as soon as possible. They will help you figure out how to deal with the situation.

My parents are older, I've been dealing with my dad's cancer battle for 9+ years, and helping my mother through it. While I haven't had my parents living with me, I do understand what a toll it takes on a person to be constantly worried and/or caring for a parent who is ill.

 

[Smith1942]

Makhr, I really, really feel for you. This situation just sounds horrendous. I can't imagine having my parents live with me.

So, you say she is too young for a nursing home, but there are homes for people with chronic conditions that don't actually need a nursing home, just supervision. Where I'm from, those are called rest homes and they are distinct from the full-on 24-hour care of a nursing home, and less expensive. I know she's young, but since she has a health condition, she might well qualify, perhaps? Also, the facilities might not all be as awful as you think. Could you go and see some? Since she is actually sick, there might be more help than you think despite her relatively young age.

If there really is no help, and she really can't afford to live on her own, she surely would qualify for respite care. That's where the sick person goes into a care facility for a week or two to give carers like you a break.

If I were you, I would go to my PCP and explain that you are not coping and do not feel you can go on like this. Doctors are plugged into all sorts of services and resources for sick seniors and the people who care for them.

I know you love your parents but you also have your own life to live. What if you wanted to start your own family?

Could your father help with her care or her living expenses? What about siblings?

There must be a solution. I mean, what if you were run over by a big red London bus tomorrow? Would she suddenly be on the streets? Probably not - people would find a solution. But as long as you're putting up, nothing needs to change and everybody's lives are nice and comfy except yours. You're going to have to start hollering for change, or it won't happen. Tell family members or social services that you can't cope with this, you and your husband have got starting your own family to think about (whether this is on the immediate horizon or not, you should have marital space and privacy to have the possibility, at least) and, basically, that you want your life back.

This is a very difficult situation and I just can't imagine being such a burden to a grown child. It isn't fair on you. xxxxxxxxx

 

[rosetta]

Makro, I really feel for you. I'm pretty sure I will become a carer for my in laws soon (right now I only have to help out with chores when I'm over there, but I've already gone part time, partly to ensure that I have free time to help them whenever the need arises. I wouldn't be able to go part time at the drop of a hat if they suddenly deteriorated i.e. it would take 6 months to a year to organise).

You need help. Please don't try to go on as you are. Plus I think you need to have a serious chat with your mother. My in laws are enormously grateful for whatever I do for them, and usually, most people are. I do hope your mother is not taking undue advantage of your good nature and has a good grip on how much poorer institutional care would be!

 

[ruby59]

I have been caregiver to both my mother and mother in law. And it was exhausting. Nursing homes and assisted living facilities are not just for the elderly. It is for people with chronic health conditons, for which it would not be safe for them to live alone. Mine started out in my home. One eventually went to a nursing home, the other to assisted living.

May I suggest that you first have her evaluated by a doctor. Then call your local city hall, explain the situation, and ask who you should speak with. There are many services out there who can help with respite care up to nursing home care when she qualifies. They will ask for information about her financial resources and fees are on a sliding scale based on ability to pay. If your mom does qualify, she may be eligible for Medicaid.

You may want to start off with a CNA who will come in and bathe her a few times a week and give you some time to breathe. Also, in my home state we have adult day care. My mom and mom-in-law went a couple of days a week. They were able to socialize, and I was able to get chores done.

But do get in touch with an agency who can assign a social worker, who can give you a wealth of information as to the services that you could tap into.

 

[smitcompton]

Hi,

You haven't mentioned how disabled she is. MS can be mild and held in check or progress more quickly. Is she in a wheelchair or can she still walk by herself? As Ruby suggested assisted living facilities are available in my state as well or plain senior and disabled
housing should be available across the country. The senior housing is usually pretty nice and she may qualify for housing assistance.


Please don't just spring this on your mother. You find out the options and then you will be able to direct her better.

First, I would speak to her about her complaining to others about you. Tell her it hurts you to hear that. But remember that people do not want to think they are not making a contribution to the household, so you have to recognize the in some way she does as well.

I think you are a great daughter. I know someone who had similar circumstances and her husband gave her the ultimatum that either the mother leaves or he leaves. She choose her husband and resettled her mother. It was hard, but it can be done.



Annette

 

[movie zombie]

does she qualify for SSI?

 

[marymm]

I was a caregiver for my father - have you searched online under "caregiver resources"? There are numerous reputable sites with a lot of info, links, referrals, etc., and there may well be a caregiver resource center in your geographic area which should be enormously helpful to you in terms of local resources.

My dad had dementia which progressively worsened - so his short-term memory, vocabulary, and conversational abilities were greatly affected - we learned to basically ignore the wrong things he said when he recounted events or family stories - in essence, it wasn't his fault that he was getting it wrong, and it made no sense to try to correct him, because he wouldn't remember the correction - and it brought too much negativity.

Not sure whether you are involved with your mom's doctor appointments, but when my father's condition deteriorated we (my mom and I) would address the new behavior concerns with his doctors - sometimes there were medication adjustments they could make that really did make a difference in my dad's day-to-day behavior.

And although many of the nursing homes that accept social security / medi-cal are not places many of us would find acceptable for ourselves or our loved ones, there *are* decent ones out there - you really have to scout around to find them - and once you do find one, more than likely you'll have to be placed on a waiting list for 6 months to a year if not more.

The caregiver resource websites should provide you with info on how to research the quality of the various nursing homes in your area - for those that consistently meet nursing and safety requirements, I would encourage you to arrange short tours so you can create a short list of facilities. If you are on a waiting list, even if they call you about an available bed, it doesn't mean you have to accept it - but be sure you understand whether that means you go to the end of the waiting list or if they skip to the name below you and you stay on top.

As a caregiver, you need respite - regularly. And your husband also. It is a huge stressor on relationships - there's no way around that. You have chosen to take on the care of your mother - and you and your husband will have to periodically redefine what that care is comprised of - at some point, you may decide that for all concerned, best care for your mother would be a suitable facility - or with the assistance of the various caregiver resources, you may be able to cobble together a support program that allows you both to continue to have your mother with you.

I know it is not easy, but all you can do is your best - arm yourself with all of your options so you know what is available, even if some of those options are not applicable now, they may be in the future. Good luck.

 

[makhro82]

Thanks for the replies. I'm going to post a response to all of you tomorrow as I'm too tired for this tough discussion tonight

 

[makemepretty]

Been there, done that.

I started taking my mother to doctor appointments when I was 17. I finally got her on the right medications a couple of years ago, I'm 42.
I realized when she was having more good days than bad, she would find ways to make herself "sicker". For example, she'd start drinking and driving or start smoking to make her cough worse. She'd play my siblings against each other. I realized, I wasn't just helping anymore. I was doing EVERYTHING myself and enabling her to continue using me.

I finally put my foot down and said no more. It's killing me financially and emotionally. Then some of my siblings offered to help, or take turns. I've said I've taken all my turns already, I'm done. She's in her early 60's, who knows how long she'll need help. I realize I have a lot of anger.

I've had loads of guilt and feeling bad about the decision not to help but it's what is in the best interest for my family. She's having gallbladder surgery this month and I've refused to take her so my brother will. She's so grateful for his help, it makes me a little sick. She doesn't realize that him helping her, helps him. He's used her for babysitting, dog sitting and paying rent on the house he bought. Whereas, I've never benefitted from helping her. In fact, I refused to let her babysit my kids because of her "medical condition".

Sorry, became a bit of a rant/vent. My advice, help if you want to but it doesn't make you a bad person if you don't. Sometimes you have to set limits in order to have some semblance of a life.

 

[iLander]

My 1st uncle and aunt had to deal with this with my grandmother. She was so rude and such a bitch she broke up their marriage. She would just needle and bitch endlessly. She raised me, and was an abusive bitch (physically and mentally) the whole time, so I said no way right off. My 1st uncle ended up leaving his wife, reviving his alcoholism, and eventually died homeless.

Meanwhile, grandma went off to 2nd uncle and aunt. They took all her pension and income, and they deserved every penny. She still ranted and bitched, but my aunt was a nurse for mental patients, so she could deal with it. Dementia finally set in, to the point where they just carried her from place to place, she wore diapers and couldn't speak English (not her first language) at all anymore. They needed the income, she needed the care, and I thought it was an excellent arrangement.

Draw a line with your mother. She is an adult, and she can control her mouth. It's not your fault she has MS, and she needs to stop taking it out on you. She needs to grow up. Take her on a tour of some of these lesser homes and show her were she can end up if she doesn't straighten up. I hope you have siblings, they need to cough up some dough, pronto. And some help.

I'm sorry that you're going through this. But don't be a doormat. Your husband and your life deserve more energy than your ungrateful mother. You're entirely too young to put up with this shit. She could live to 80+, and how old will you be by then? Put her in any home that will take her, and toss the guilt aside. Don't worry what people think of you, they don't do it very much.

Sorry if I ranted, I've still got anger about the lives grandma destroyed.

 

[marymm]

OP - I forgot to mention - I was only a caregiver for apx 6 years, and my dad by-and-large was a wonderful, loving man - so not very similar to your experience. Still, I will admit that after that experience, I told my mom straight-up that that was it for me, I would not go through the caregiving-for-a-parent experience again, and that she needed to take that into account. I know she would have preferred that I be her caretaker when the time came, but I knew I (and my husband) could not go through that again - and I have plenty of other siblings that could/should step up to the plate. My siblings I know have quite a bit of resentment against me that I am on the record with my mom about this, but they were nowhere when I was taking care of my dad and my mom - and to give my mom her due she took my decision with grace and she named other siblings on her health and financial Powers of Attorney.

 

[junebug17]

Makhro82, my heart goes out to you...this is just a horrendous situation, and obviously you can't continue this way. I have no constructive advice except to get on the internet and start calling agencies until you find someone to help. Start researching. There are caregiver forums that could offer advice too...I belong to agingcare.com and it's been helpful to me. I am a part-time caregiver to my 88 year old mother - but my situation is different - I'm 53, I've lived a lot of my life - you are so young, you haven't even had a chance to live your life. Something has got to be done - your mother is probably going to live many more years, and I just can't see you going on like this for much longer.

What about siblings/other family members? This shouldn't be just your problem (although unfortunately that's how it usually works).

How old is your mother? How much care does she need right now? What type of health insurance does she have? Not sure what she's entitled to. Again, probably time to start making phone calls.

If nothing else, you need to have a serious talk with your mother...it is unacceptable that she is nasty and abusive. You've got to let her know you're just not going to tolerate it. I know people with dementia get this way, and they can't help it but that doesn't sound like the case with your mother. Time for her to count her blessings. I agree with ilander - maybe a trip to a facility will make her appreciate you, and make her realize she's damn lucky to have you.

So sorry you are going through this, wish I had better suggestions...some type of assisted living/facility is not out of the question IMO.

This thread has made me decide - husband and I are going to get long-term health insurance - really don't want to end up being a burden to my family.

 

[ruby59]

Just to add to my post up there, there is no shame in realizing that a situation is just not working anymore. I took my mom and mom in law into my home when they first became ill. My mother suffered a stroke and then developed dementia. Eventually, she could not be left alone. All of us siblings had jobs and young children. Adult day care worked for a while, and everyone did as best they could. But my mom then started to wander. Police ended up bringing her home a few times. On others, I would have to search the neighborhood to try and find her. I put up baby gates so she would not fall down the stairs, double locked all doors, tried to make the house as safe as possible, but never got a restful night's sleep.

I also took in my mother in law who had CHF, diabetes, and tended to fall alot. Eventually, she could not be left alone either. Even while I was home, it was difficult to watch her 24/7 and get anything done.

My mom and mom in law were terrific and appreciative. But it got to a point where it was not safe for them and it was affecting my health and that of my family. So each went into the proper long term facility best suited for her. I felt guilty, but in the long run, if you do not take care of yourself, you are of no use to anyone else.

When the time comes, and you will know it, do your reseach and put her in the best facility for her. Then know you made the best decision possible for everyone involved. Then if you need to, I did, join a support group. It really helped me to talk it over with people who had gone through the same situation, and know life goes on.

 

[distracts]

I have read like five threads like this on forums I frequent this week. I don't get it. I would NEVER volunteer to have my parents move in so I could be their caretaker! I love them, but not THAT much. They pay for their retirement center or live-in nurse or they get stuck with whatever one their SS payments or whatever will cover. But my parents know that, because they felt the same way about their parents, and they've been planning for their eventual decline for as long as I can remember. I guess none of us are really the "suck it up and deal" kind of people.

 

[makhro82]

Monarch64: Thank you. You are right I am completely at the end of my rope. My DH is as supportive as he can be but he is under a lot of the same stress that I'm under.

Smith1942: I go to most of her appointments and I explained to the doctor that she has been on a decline over the last two years. I do have siblings but one is not involved whatsoever and my other sibling is working on finishing up their education. Once done I will rely on them more for intermittent breaks. As we live in different states we have to coordinate.

Rosetta: We've had numerous, serious chats and nothing has changed. Part of her cognitive shortcomings are related to her memory.

ruby59: She is not eligible for any assistance since for whatever reason they count my income! I will look into some short-term facilities to provide some relief and a social worker. I am getting to the point where it just isn't working like you said. There are 3 adults in my house and all three are unhappy.

Thank you everyone for your kind words and support. More than anything I guess I wanted to just vent and know that I'm not alone in this situation and that there are resources out there for people in this situation.

smitcompton: She is not old enough for senior housing yet. And I have talked to her many times about the complaining to no avail and would never spring anything on her. We've discussed this for MONTHS. I don't believe that she will ever feel like she is contributing unless she actually lives in her own home.

moviezombie: She gets some SSI but nothing significant since she became disabled at 27 and worked intermittently until she retired at 40.

marymm: Thank you for your advice and kind words. My mom has been dealing with her condition for 26 years so at this point I think she has really given up. She doesn't do all the treatments that the doctor recommends. And you're right I have to find that needle in the haystack facility that is going to be "decent" because I have been disgusted by what's out there.

junebug: I have siblings but little help from them. She has insurance through social security. In many ways she can be like a person with dementia. She can be mean and very forgetful to the point of being unsafe. I will look into the forum you suggested.

Distracts: That's fine if you have TIME to plan. If you become ill or have a catastrophic event at a young age then what? My mom has been disable since the age of 27. I "volunteered" because I am not comfortable with my mom being destitute by medical expenses and being poorly taken care of. You never know what you are capable of doing or not doing until you are in that situation. Ideally my spouse and I would not have been 20somethings living the lives of someone much older. We have postponed major decisions in life and it is not anything we ever wanted to volunteer for.

 

[LaraOnline]

Mahkro your thread is really sobering.
I have nothing to add but my wholehearted support.
I am living in a different country to you, but when my beloved grandmother became seriously ill and had to be homed last year, we found a great difference between the city facilities and the country facilities.
My grandmother lived in Sydney, but my mother lives in a regional area, so we had scope to check out both areas.
To our surprise we found the country facilities were much, much better!
Don't know if this helps you at all...

 

[rainwood]

I'm so sorry you are having to deal with this at such an early stage in your life. Most of us don't have to confront these issues until much later. If all you want to do is vent, that's fine. It's healthy to vent, it's important to have an outlet for your anger, and PS is a good a place for that. And if that's all you're looking for, there's no need to read further.

If you really are at the end of your rope and something has to change, there are a couple of things you should do. First, look more deeply into why they would count your income when determining if your mother qualifies for any federal or state assistance or programs. She's not your child. If it's because you claim her as a dependent on your tax return, check to see if that's how it really works and if it is, stop claiming her as a dependent so she can qualify. The tax break isn't big enough to offset the ineligibility for assistance.

Next, ask yourself the following 4 questions:

1. Am I willing to give up my marriage to care for my mother?
2. Am I willing to give up my career to care for my mother?
3. Am I willing to give up having children to care for my mother?
4. Am I willing to give up my health to care for my mother?

If the answer to ANY of these questions is no, then you need to find a place for your mother to live. It's that simple. If having her live with you is causing great stress now, that is only going to get worse as your mother's condition worsens. This situation is not going to get better. And if one of your siblings isn't willing to participate in your mother's care now, that's unlikely to change. And if your other sibling is in school, graduation isn't likely to make him or her better able to care for your mother physically or financially. So don't wait for that event because it will probably not provide you relief.

And don't wait for the perfect place. It may not exist for her. She may have to go somewhere that's not great, but that's just the way it is. If you and your husband were to split up or had financial problems or you got sick from the stress, she'd have to go there. And when her condition gets worse and you can't physically care for her anymore, she'll definitely have to go there. Start looking now and, as others have said, if you find a place that's okay, get her on the wait list.

It's not your duty to sacrifice your whole life for your mother. It's just not. You've done everything you could reasonably have done, more than many would do, and it's time either for your siblings to step up and take this off your shoulders or for your mother to move to a place where someone else can care for her.

 

[Loves Vintage]

makhro - Have you been in touch with your state's MS Society at all? I would think they would offer some ideas re: possible housing solutions and how to obtain such housing? It does not make sense that they would take YOUR income into account if the situation you are seeking would have her living alone. I do not know if there is any type of disabled person housing available. It looks like in my state they were proposing some sort of home care solutions for disabled persons under age 64. I did not research too thoroughly, but hopefully your state's MS society can provide some guidance if you haven't spoken to them already.

My sister has MS. I know exactly what you are talking about when you say your mom can be very mean, you talk to her about, yet it never changes. My sister is the same way. It is extremely sad. You are a good daughter. I do hope you find some guidance in finding a safe and good place for her to live.

 

[ruby59]

Monarch64: Thank you. You are right I am completely at the end of my rope. My DH is as supportive as he can be but he is under a lot of the same stress that I'm under.

Smith1942: I go to most of her appointments and I explained to the doctor that she has been on a decline over the last two years. I do have siblings but one is not involved whatsoever and my other sibling is working on finishing up their education. Once done I will rely on them more for intermittent breaks. As we live in different states we have to coordinate.

Rosetta: We've had numerous, serious chats and nothing has changed. Part of her cognitive shortcomings are related to her memory.

ruby59: She is not eligible for any assistance since for whatever reason they count my income! I will look into some short-term facilities to provide some relief and a social worker. I am getting to the point where it just isn't working like you said. There are 3 adults in my house and all three are unhappy.
Thank you everyone for your kind words and support. More than anything I guess I wanted to just vent and know that I'm not alone in this situation and that there are resources out there for people in this situation.

smitcompton: She is not old enough for senior housing yet. And I have talked to her many times about the complaining to no avail and would never spring anything on her. We've discussed this for MONTHS. I don't believe that she will ever feel like she is contributing unless she actually lives in her own home.

moviezombie: She gets some SSI but nothing significant since she became disabled at 27 and worked intermittently until she retired at 40.

marymm: Thank you for your advice and kind words. My mom has been dealing with her condition for 26 years so at this point I think she has really given up. She doesn't do all the treatments that the doctor recommends. And you're right I have to find that needle in the haystack facility that is going to be "decent" because I have been disgusted by what's out there.

junebug: I have siblings but little help from them. She has insurance through social security. In many ways she can be like a person with dementia. She can be mean and very forgetful to the point of being unsafe. I will look into the forum you suggested.

Distracts: That's fine if you have TIME to plan. If you become ill or have a catastrophic event at a young age then what? My mom has been disable since the age of 27. I "volunteered" because I am not comfortable with my mom being destitute by medical expenses and being poorly taken care of. You never know what you are capable of doing or not doing until you are in that situation. Ideally my spouse and I would not have been 20somethings living the lives of someone much older. We have postponed major decisions in life and it is not anything we ever wanted to volunteer for.

As a follow up to your response to me, and I always assume, but are you from the United States? I am curious, as I have done extensive research before placing my mom and mom in law in facilities, but why do they count your income? Is it the way you filed your taxes, maybe. Are you on joint savings accounts? If you are in the US, and her finances are separate from yours, I do not see how they can link your income to hers - at least not the way it was explained to me and my husband by an elder care lawyer - As that was a major concern for us.

 

[smitcompton]

Hi,

Senior housing is not only for seniors but includes disabled persons. Your income will not be included for housing. Yes, for some things, like meals on wheels, they count household income for eligibility. This is a reason in itself to get her her own place. They take 30 % of her income for housing. You must put her on a list. Sometimes these lists are closed because they fill up. Then at a future date they open enrollment again. Call the Hud Housing Authority in your state, or local housing authorities to find info.

Be careful, they may incude your income for any benefits she may be entitled to. Try to get her her own housing.


Annette

 

[blondie~]

Hi, I just logged in to say I'm really sorry for your situation and have much empathy for what you're going through.

 

[pregcurious]

I took care of my mother when she was dying from colon cancer (in her early 60s). I was 30 when she was diagnosed. She moved to an apt near me and my husband. When she lost full cognitive capabilities due to dementia and morphine, we moved into her apt and lived there for about a year. I took it upon myself to take the lion's share of responsibilities, and treated my husband as my helper (not my mother's helper). We hired help ($15/hr) for when I worked with my mother's money. I paid for things like my mother's food, clothing, and things that she would not see. She didn't want to take money from us, but I knew she did not have enough to live out her life.

My sibling lives outside of the US and did not help in any way. Not even a penny, even though she was extremely well to do. I was a grad student, and my husband had decent job, but nothing that made us financially stable. I am not bitter. I hurt my career to help my mother, but now I have a job I love. My ego had to take a permanent back seat as my original career is not longer open to me because of the sacrifices I made.

I feel for you. Do not damage your marriage. Anyone who loves you would not want you to damage your marriage. I did not delay my first pregnancy because I had already done that for my husband. I was 7 months pregnant, and sleeping on a cot in my mom's hospice room when she died. My husband was sleeping in a chair. I had issues getting pregnant the 2nd time (after my mom died) so I am glad I did not delay the first pregnancy. I had to go to a fertility clinic, but in the end I did not need any interventions. Still, it made me realize what a difficult and expensive road interventions (e.g. IVF) would have been.

It sounds like your mom needs to go into an assisted living situation if you cannot live with her. They should not be counting your income if you are in the US. Do not mix your finances together as it will cause problems after she passes away. We kept everything separate, and when she died, it was very simple. My mother had full trust in me for her finances, so I was able to manage them with power-of-attorney, and executor of her will. For my father (who died the same year), my husband executed the will. My father did not want my help, and as a result died alone. He was trying to protect me, I believe, because I had just had a child. He died 5 months after I gave birth. It is so far my life's greatest sadness.

It is really hard to take care of someone who has mental deficiencies. I believe that adults are harder to take care than children because they are so physically big and verbally able.