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I am caring for my 81 y.o. Alzheimer mother. I do not enjoy it. It is a big burden. Caring for her has taken over my life and that of my family. No holidays, no vacations, even outings have to be cut short. Hardly any breaks. I hate it. I resent it. But I don't have any other choice at the moment. But it got me thinking about the future when I get old. I don't want to become a burden to my children. I come to believe that our bodies should not outlive our brains. Once my cognitive ability is gone, I want to go with dignity. I would like to hear what you, fellow caregivers, think and suggest we do to not become the burdensome parents to our children. Thank you.

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Polarbear, save money like there is no tomorrow. i know for some of us, it's impossible to get back into the work force full-time, especially a job that has excellent benefits. Like matching 401(k).

Getting older can become so very expensive, I know it was a real eye opener for me when my Dad went into Assisted Living, and when my Mom went into a nursing home, both were self pay. And prior to that the high cost of professional caregivers around the clock.

I use to think that I would always have Medicaid to fall back on should I outlive my savings, but now I honestly believe I can't rely on that any longer, thanks to the newly passed U.S. Tax Reform.

Thus, with large companies no longer adding large amounts to the tax coffers of State and local government something has to give. What comes into play will be take from Peter to pay Paul. Our real estate taxes and sale taxes could see a climb to make up the difference.

When it comes to State/local programs, history has shown us that Education and Health programs get slashed first. Will that Medicaid safety net still be there? Oh, I sure hope so.

Also, to help our children from being a burden, make sure all of our legal documents are up-to-date. If you need to blow the dust off of them, time to make an appt with an Elder Law Attorney, as State laws do change. Now a days, Medical Directives are needed to help our love ones know exactly where you stand with final health decisions.
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We can always hope that there will be a cure or prevention in the next 20 years.

Somehow, I don't think that will happen. Mother stopped all the things linked with Alzheimer's (no more deodorant containing aluminum, etc.) but she started at 60 years old! She also smoked for 40 years.

I hope to be able to recognize the symptoms, then be screened for it. I'm not hiding my head or having too much pride. I want to know immediately.
Judging by my mother, I'd say I've got until stage 4 to handle it by myself. By stage 5, she was too wacked out to make any decisions for herself.

If my situation stays the same as I age, then I'll only have my husband in my old age. My son wants nothing to do with me and I'd never burden him with that anyway.

We can make sure ALL our affairs are in order and have everything done way before we loose it! I'll give away anything I would "will" someone so I can see them enjoy it.

Since I'll be retiring in Mexico, a few pesos can buy you anything, like a bottle of sleeping pills. Don't know IF I could actually go through with it, but, if there's no one to help me as I go crazy, then that would seem like a doable alternative.

I have only questioned Gods' decisions when it came to little kids being gravely sick. I just can't see why little ones should suffer. Now, I've added another group, the demented. It's a horrible disease that robs the person of their mind and ability to live their lives and thoroughly trashes the lives of their families, some of whom will give THEIR lives caring for them. I'm pissed about the whole thing and plan to not have this ugly disease ruin my life and those around me.

I'll do what I have to do at the time. In the mean time, after mom goes to God, I plan to really live my life so I'll be fulfilled when I have to check out.
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This hits close to home--my mother is failing, and failing quickly. She's just shutting down and it's horrible to watch. Yesterday was constipation and she was crying in pain...she had overdosed on Zofran, not realizing it would stop her gut motility. I got her a couple of enemas and offered to help administer them....she declined, and when I called her later, she said it had helped, but that she was now terribly nauseated.

Well--it's always something.

A few weeks ago she said she felt like stopping all her medications and letting "it" go. I told her I completely supported that decision. She is diabetic and the end would come pretty fast--but also pretty miserably. Then she said "But that would be suicide." In my book, no, not even close. I think she is being kept alive artificially NOW, with all the stuff she takes. And she's miserable. All her friend are gone, she is too tired and sick to go anywhere or do anything. There is no joy in any day.

She is definitely a burden to us kids. No happiness, no joy, no enjoyment of life. I wouldn't keep on. Something in her makes her keep on pushing and I have no clue why.

I plan to NOT be a burden to my kids by pre-planning everything I can, NOT expecting them to do a single thing for me and hoping I die young enough that they have fond memories of me---not sad ones of me sick, miserable and grouchy.

In the end, though, I guess it really isn't up to us how we go. I just really, really don't want to burden my kids the way my mother (and my MIL) have with their kids.
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Thank you freqflyer, SueC1957, and Midkid58 for your responses.

My uncle who was 77 just passed away couple of weeks ago. His blood vessel swelled up and burst. That was because he stopped taking his high BP medication which he said made him feel lousy all day. He was also going blind slowly. He went to the hospital for 2 days and he passed, after seeing his kids and ex-wife, saying his good-byes, and writing down his last wishes in a sealed letter. In his letter which his kids let me read, he said he felt so free of all the burden of life, and he was ready to leave his body and take the next step into the spiritual world. When he died, his face looked so peaceful. I thought that was a nice way to go. Midkid58, I do agree with you that modern medicine is keeping a lot of people alive artificially. Without it, we would die naturally when the bodies give out.

So far, here is what I come up with as far as what to do to not burden my children:

Save as much money as I can like freqflyer suggested.

Check into long term care insurance and see what it offers. We can't rely on government. Who knows what will happen in 20, 30 years.

Stay healthy. I started reading this book called Cured 81 natural cures for cancer, diabetes, alz, and more. So far, what I gather is that we don't get enough nutrients from food and that causes cells to die. So, i am now taking multivitamin and fish oil to support my body and brain.

Finish my will. Yup I will have to dust off the paperwork.

Pre-plan my final arrangement.

When I know my brain is dying (at what point I don't know yet), I will stop taking meds so my body can catch up to the brain.

Leave instructions to not give me meds to keep my body alive artificially. I wonder if that is legal to do. Hmmmm.

Most of all, work on my spiritual strength so I can be ready to go when the time comes.

Do you have any other suggestions to add to my list? In the meantime, i will try to enjoy whatever free time I have with my kids and husband. I think I will ask for periodic help so that I can take a break from caring for my mother. Now that I have a plan, I do feel a little better.

SueC, living in Mexico where you can stretch your money does sound really nice. Stay healthy so you can enjoy all the time you have after your mother leaves.

Merry Christmas/Happy Holidays to you all.
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my mom is in her late 60. i would not mind taking care of her but she is so bitter, mean spirit, inconsiderate of my feelings( sleep during the days, and yelled during the nights). i never do anything right. maybe have a talk with your daughter about your needs.
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At 80, I am still pretty well off, all things considered and not a burden to my children. My mother, who is 105 now, chose the ALF/NH route for herself. I will do the same. I will downsize soon (still am in my big house and still am safe there) into a condo near a larger centre with more resources. I look after my health - basic lifestyle stuff of diet, exercise, sleep, stress management... When I need more help, it will be an ALF. Mother moved into one aged 96. If she had not had a personality disorder, caring for her wouldn't have been such a burden. When she developed vascular dementia on top of that in her late 90s, it was a 5 ring circus. We haven't had Alz in the family anywhere. That being said no one knows the future, and what ailments lie ahead.

I am deciding which of my kids I want involved in my care. I don't think most of us can escape entirely appointing someone to care for our finances etc. It would not be wise not to. Someone has to use my money to pay for my funeral, if nothing else. My dd wants to do it, but I think I want my oldest son as a co POA/personal agent (health) too. I know he is willing. My middle son is very involved with his wife's parent's care and his wife has ongoing health issues , so I think he has enough on his plate. 

Sig other is younger and he helps, but he has his own issues. I am coaching my dd about signs of cognitive decline that I have learned on this site. Oldest son will figure them out. We have very deep discussions, and I am sure he will pick up any decline, should it occur.

One aunt lived in her own in a senior unit (row house) with help with shopping and appointments, but otherwise was independent and "with it" till she was 97. Then she lost her balance and fell reaching for the milk bottle on the steps outside. It was cold, she wasn't found right away, she already had a heart condition, and developed hypothermia. She died in hospital two weeks later. That would be a good way to go if one could chose.
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SueC, I know you probably already checked to see if Medicare [now or in the future] is acceptable in Mexico. That is one thing other people need to think about when moving to a foreign county... how is their health care. And if all parts of Medicare is accepted or not. Or would you need to be flown back to the States for medical care. It can become complex.
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Dear polarbear,

Thank you for sharing your tips and the story of your uncle. Life is so hard. Part of me is selfish and didn't want to lose my dad but it was an uphill battle in the last three years of his life.

As for myself, I, too will plan as much as I can and make my wishes known. I don't think any parent sets out to be a burden, but that's how it feels sometimes towards the end. In grief many painful lessons are evident. I wish I was a better communicator and had better boundaries and then maybe I wouldn't have been so angry or resentful about my responsibilities.
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I am so blessed oldest child, a daughter, is making plans for our future care and currently helping as much as we let her. She wasnt to move us closer to her and is ready to buy a house for us to live in.. No there won't be any money left for her or the siblings to inherit so no alterier motives there. I have been resisting the move but now moving closer to just let her get on with it. Hubby is set on a course of being sicker than me so he thinks he can make me take care of him. Can't happen I am afraid I am just too weak.
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The only thing I’ve come up with to avoid burdening my daughter is a stash of very strong medication, taken all at once when the time is right. I agree, I don’t want to lose mental faculties but have a body hanging on and on.
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Hey FF,
No, unfortunately Medicare is not available in Mexico for the 1 million expats who live here.
There are groups of gringos working on this but it may be years away. Nor do they accept any American insurance. You would have to pay up front then be reimbursed by your insurance company.

Contrary to what most Americans and Canadians think, you have some excellent choices for hospitals and doctors in Mexico but you have to pay upfront. (Many of the Mexican docs have studied in the US.)
The cost for specialists is more (about 500-1500 pesos=$35. $90.US) for a consultation but it's still way more affordable than in the US or Canada.

You can buy insurance from Mexico (IMSSS) which is very reasonable ($200./yr. but has limited coverage) or from private companies for American coverage for the private Mexican hospitals ($20000./yr).

Another option is to fly home to the US ($300.-$450. RT) for your medical needs through Medicare. I have friends that do that.

Most of the time, minor illness can be handled in Mexico. It's up to you if you'd want have surgery there. Hardly ever have I seen anyone medivac'd by special airplane back home. It can run $10,000.

I lived in Puerto Vallarta for 3 years and never had a problem. My husband was a different story but that's for a different time.

It can work.
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Since my 22 year old only child has lived in a house with her grandmother there every day of her life, I think it’s all ready done. She and I have had many discussions of how history won’t repeat itself. She and I know first hand how hard it is to have a normal life in our situation. I promised her and so has my husband that we won’t ever move in with her. Yes we want to be in the same town. That’s it. Not the same house. She totally agrees.
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SueC - you are a great source of helpful information.

I just remember in Southern California where I live, there is a Catholic diocese sponsored senior housing program where seniors will be well taken care of for LIFE from A to Z, medical expenses included, once they sign on to the program. I think (not certain though) that what the church asks for is all the money from the individual to be donated to the church, and there is a minimum of some million dollars. The seniors will come to live in high end apartment homes with round the clock nursing staff, house keeping/home help, wellness programs, all meals, etc.
This is a very nice option if one has enough money.
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I am 80 and live in assisted living with my husband who has PLBD. We were fortunate to have purchased LTC insurance which enables us to be here. I don't think there is any way to totally not be a burden to someone. In my case, it is the only daughter who lives nearby. We have a bus which will take us to Drs, but other than that, only to Walmart. She must do shopping for us (even though I do a lot on-line.) She visits twice a month
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I truly believe there is going to be nuclear war in a year or two so you don't have to worry about anything. Otherwise you would have to invest in nursing-home insurance but it's so expensive who can afford it? The problem is medical science keeps people alive longer and longer that living 80's and 90's is NO LONGER unusual -- in addition to aging baby boomers so Alzheimer's is rapidly rising and is already the most most expensive chronic disease in America. It already costs about a quarter of a trillion dollars a year to care for this nation's old population; the Alzheimer's association estimates by the year 2050 Alzheimer's disease will cost the nation a trillion a year. These estimates do NOT include the billion in unpaid labor done by caregivers. Which impacts THEIR Social Security (many caregivers devote full time to care because it's cheaper than hiring someone since sitters cost $20 an hour which do nothing but watch the person; CNAs are $40 an hour who do hands-on care, and extra home health expenses for medication administration ) so they too will become a major expense to Medicaid. DO NOT SAVE YOUR MONEY (not too much of it) because the government will not pay anything until you are flat broke -- in fact the US Government WANTS you broke. You cannot get on Medicaid unless you have $2000 or less and you cannot "gift" your assets to anybody due to 5-year look back law. Old age insurance also has a spending limit. Nursing homes run (currently) on average about $85,000 to $95,000 a year per patient--which is a LOT cheaper than around-the-clock home health care.
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My husband and I do not have children but we do have LTC insurance. We would move to a place like my father's which has a benevolent care fund. So that if you go through all your savings, the fund covers any remaining costs until you die. They use your SSI, etc. and then their funds to make up the difference. His place is owned by the Methodist denomination. There are also some run by Catholic and Presbyterian denominations.
Also everyone should have an advanced directive or living will. Yes, you can tell them not to administer medication. I agree that we are living too long and I’ve often said we should be allowed to assist our death if we desire to. Some states allow it.
Of course avoid what we know contributes to some types of dementia like smoking, inactivity, poor diet, excess alcohol, etc. they link inflammation to dementia as well as untreated sleep apnea and poorly controlled blood glucose. Continue to have social contacts and a spiritual life, learn new things to challenge the brain and then realize life is short and enjoy it while you can. Harder to do when you are deep into caregiving for someone with dementia. Anyway, pick and choose and control the things you can.
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I plan to have a way to end it with drugs in case I need to. With an opioid overdose you go to sleep and don't wake up. Yearly refills would be necessary because drugs lose potency with time.

I'm single and didn't want kids. I could marry a much younger man but he might die first--or leave before I do! I wouldn't want to burden anyone with my disintegration anyways.

Alzheimer's runs in my dad's family; he died of it and my brother is getting it. My mother is 90 and getting very forgetful and crazy. I had wanted to take care of her as she ages but have decided not to as she has always been mean to me and my pets. She has narcissistic personality disorder, possibly along with something else like borderline personality disorder. She is heartless and turns into a sort of werewolf. It's hard to describe but she is toxic.

There are so many articles about eating right and exercising in order to live as long as possible; do we really want this?
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Buy long term care insurance if you can.
Move into a facility where you can age in place before they start telling you that you should. Do it not just because it will help them later but do it because you will get more socialization, take advantage of the things offered, make new friends, do new things. Make it so your kids and grand kids say..."We never get to see you anymore, you are so busy".
Get all your papers in place. Will, Trust, POA. And all that other stuff that no one wants to talk about but everyone should.
Make your wishes known. Do you want to be given CPR? Do you want breathing tube? Do you want a feeding tube? All this is detailed in a document called a POLST. It is more detailed than a DNR.
Make your Funeral arrangements and have them paid for.
Make sure someone knows where all your documents are.
If you are healthy now...great.
If you are ill now make a decision at what point will you stop treatments and will you contact Hospice? Quality of life is better than quantity as far as I am concerned.
Live your life with a smile on your face, an outgoing attitude goes a long way to bolster your life. If you wake up thinking you are going to have a lousy day..you will have a lousy day.
Give more to others than you expect back. Karma...what goes around...
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All good answers here just one more suggestion to stay healthy you must excerise , excerise and a healthy diet will keep you alive longer in a healthy way , that has been proven again and again , we own personal training studios and have many older clients in their 70’sand 80’s these people are doing great still active and healthy and they know they need to keep this up
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DianaHollis Sounds like you & I have the same plan. I, too, have a stash of strong medication.
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No matter your age, you should always have a complete and current Will. My husband and I drafted ours the first year of our marriage, and we changed only a few things around after we had children. We go over our Will and care plan, once every 3 years.
Remember, when looking at your "stuff" in your home, while it may have great value to YOU, it won't always to your children. If there are steps you can take now to minimize what you have and roll any sale of things into an interest earning account, DO IT! Also, have your children pick 1 item in your home they definitely want, and either part with it now, or mark it for them later.
I'm hearing a lot in this thread, "... when I start to lose my mind, I will ..." The problem is, you won't. You won't know you're losing it, and you won't have the cogofunction to say, "oh I need to give this away, or draft that Will, or move here or there...". Make your plans now and give your adult children the power to make medical and financial choices for you, for when that day does come!
My sister and I are dealing with a huge ball of financial messes, my parents have made, including having to draft POAs for them and hire financial advisors, and move them from their home to a nursing facility... and dealing with a reverse mortgage we knew NOTHING ABOUT...
Make your plans, put them in writing, don't be afraid of your children, and visit nursing facilities or retirement places that you might like to be in... seriously, the best gift you can give your children is for them to not resent you for having not trusted them and done it sooner!!
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I would suggest, in response to cetude's comment, that there is nothing wrong with saving money. Some people never need long-term care, and some only need it on their deathbeds. If you have money but need long-term care, then you have choices until you either run out of it (then the government takes over, as cetude mentioned) or if you don't use it all up then it can be inherited or willed to whomever you wish. If you don't need long-term care, then again you can enjoy it or will/donate it to whomever you wish. Having money always gives you options that aren't available to someone who doesn't have any.
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What some of you are missing is the effect of exercise and diet on the brain, too, not just the physical part. Due to my arthritis, I do my aerobic exercise in the pool, where nothing hurts but all the joints get moved. It's a class that has us dancing in the pool, too, learning steps that are first awkward for me, but then I "get it." That is good for the brain. I am taking classes in Swedish, too, another good exercise for the brain. Anything that science is showing is good for the brain, I am trying to do. Who doesn't want a good brain? I do the puzzles in the newspaper daily, challenging myself. Getting good sleep is essential. It is in deep sleep that the brain does its "clean-up" getting rid of some of the things that causes Alzheimer's. I have sleep apnea and use my CPAP machine faithfully every night and for any naps. Without it, I don't get deep sleep. I look to the research being done with diet and exercise and their effects on the brain for guidance to try to prevent the mental deficiencies that happen with these diseases, hoping that they won't affect me. No guarantees yet on that and much research yet to be done, but I am choosing to do what little I can now in case it will help me, too. The friend for whom I am POA and is in a memory care apartment is a very physically healthy 91 year old who is aiming for 100, so my role in his care has a long window to it. My being healthy and able to see to that care is one of my goals, in addition to playing my role as husband, father and grandfather in my family. Seeing what happens to the others at the memory care place underlines why I need to take care of what I can do for myself. If it helps, I want to do it! We have also taken out LTC insurance, have money in annuities and a trust set up to try to address the financial costs of AL/MC should we need it. Still, we may become a "burden" at some point, but not for lack of trying to avoid that. Good luck to you all since we are all facing this issue!
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I'm sixty and currently caring for my late-eighties mom who has moderate (and worsening) dementia. My dad died a few years back from cancer. What I learned most from this experience is that thorough preparation is the key to minimizing the burden on younger generations. My parents thoroughly planned things financially but did no lifestyle planning. They were independent and in excellent health well into their seventies, but lived alone in a suburb far outside the city. They had no plans for housing, transportation, and caregiving once they grew infirm. When my dad was diagnosed with cancer and quickly went downhill thereafter, they were caught off guard and helpless.

So my advice would be to plan both for financial affairs and also for lifestyle affairs.
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I agree with 12paws! My parents planned the financial aspects (wills, pre-paid burial, LTC insurance). That is great and I am lucky in that regard. They never really planned for a retired or elderly "lifestyle". So, at around age 70, despite good health at that time, they declared they were "too old" for pretty much everything and just gave up. This has resulted in a wasted decade of negativity that has ruined their retirement and has influenced my Middle-age years dramatically. I guess what I'm saying is that attitude and resilience may be almost as important as getting the financial and legal stuff in place. My parents aren't even 80 yet but one is in an ALF and the other is not too far behind. LTC is paying for the care but I am still involved in managing their lives on a daily basis. This is likely to continue for at least another decade. My parents were marathon runners and health nuts, planners and savers. They just never planned to actually get "old" and slow down. When that happened, they declared they were better off dead than continuing on. Hearing your parents discuss and threaten suicide for years becomes a real emotional burden!!
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Like others responding here, this hits close to home. My 88-year-old mother is in senior living half the country away, in poor health, but in great financial shape. She has done a lot of legal prep for what happens upon her death so that is pretty well taken care of.

Nevertheless, it could be said that she is a burden, though it may only be that I take on too much guilt associated with not being there for her. I chose to retire further away that I was before and she was very angry about that. While to some extent I have control over my burden of guilt, it doesn't help that my mom all too often drops little barbs about other people's children being there for them. And if you tell her about you own health issues, she berates you saying you don't know what it's like to be dying.

So ... what I tell myself is that when I get to the stage where my mom is, I won't put guilt trips on my kids, and that I'll try to be kind to them, realizing they have have their own problems and their own lives to live. I have no idea what will be going on in my mind at that time, but I pray I can face it well and not burden others, but instead lift their load.
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Agreed about planning for finances; all I have to add is that I've suggested my daughter live in a state that does not have a filial responsibility law. In Pennsylvania, nursing homes can and do go after the assets of adult children, while other states like Texas impose no filial obligation.  I also do what I can to stay healthy as possible, but my health has deteriorated since becoming a caregiver.  When I'm exhausted from caregiving, I don't feel like working out. 

I would rather die than go to AL or a nursing home. I've also told my daughter that she is not allowed to see me doing the things she sees me do for my mother, like help her up, get dressed, to the potty chair, changing her Depends, wiping her bottom. If I am lucky enough to get cancer like my father, I'm going to move to Oregon and let nature take its course. I'm already on more blood pressure meds than my mother, and at the first sign of cognitive impairment, I'd like to have a nice peaceful death with sleeping pills or painkillers, but thanks to the hysteria about opioids, they're next to impossible to get now.

So I plan on going to Dignitas, a group in Switzerland that allows assisted suicide - they allowed it for a nurse in her 70s who did not want to endure old age after working in nursing homes. If not that, I'll take a lot of aspirin, cut open my veins, and swim out in the ocean, and pray I have the guts to go through with it. If I become incapacitated for any reason, I've told my daughter to let me rot in some horrible nursing home rather than become a caregiver.  

I think there is a difference between despair suicide and rational end of life management to avoid living with no quality of life and becoming a burden. 
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One thing I will say is that my parents hated "old people" and greatly resented the care they gave for their elderly parents. My parents swore they would never become those people and never become a burden. Well, fast forward a few decades and they HAVE become those people. Please don't EVER tell your children that they just don't understand what it's like to be old, or that they will be old too, or, that their spouse will become a burden some day, yada yada.
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Here is what we did. We maxed out on IRA and 401k contributions all our working years and invested in balanced funds. In our 50s and early 60s we bought good long term care policies. When I turned 80 we sold the house and moved to a continuing care community where we will live the rest of our lives. Yes, it’s expensive but that’s what we saved for. We planned and paid for our funerals. We had wills, trusts, POAs, health care directives, etc drawn up and assigned health and financial fiduciaries. We discussed all that with the kids so they know what to expect. Beneficiaries were updated. Since my kids don’t get along, we made sure with the help of our attorney that everything is legal so our wishes will be enforced.

Just to add a touch of reality, nursing home rates in Calif start at about $300 a day. Where we live, it’s closer to $400 if you want quality care. You need to do your homework in advance so you don’t end up in a really bad situation.
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I concur with you 110%, it has got me to thinking too..I would never expect or wish that of my children (if I had any) because of my plight. Especially not to an only child such as I. I am thinking of buying LTC insurance so that I would have a caregiver come in to take care of me in my old age, or I am thinking I would go to Assisted Living (AL) seems like it is a joy to elders and I would only want my children to check in on me, not day to day operations with me, but check on my welfare often enough. I would never want my kids to feel towards me the way I do to my mother now. I am resentful, remorseful and everything in between. I have been doing this now since 2008 and my mother is only improving so I feel like I am going to be doing this another 20 more years to which I would be 70 then!!! There goes my life!! There are parts of this I do enjoy, but for some reason, I am very mad about this.
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