I need to stop caring so much for my mother with dementia. It is literally killing me. How can I get my life back?

Just seeing this now sdbike - good for you! It's nice to hear that you are helping your niece. Sorry that you are still having to worry about the financial issues though. And don't "worry about the poor people" choice of words. My stepfather planned very well for my mom before he passed away however, since he is no longer here, and I was living in another state for 30 years, I let things stand as they were, and the investments are now not that great. Mom can afford at least one year in a memory care unit "Medicaid bed" which are few and far between. Thankfully, my lawyer is working on that end of it and also working to protect the assets she has. Please keep us posted!

momhelper123, i hear you. When I first got into this and was named the "everything", POA, Trustee, Executor, etc etc, I made a 20 year budget for my mother and what her expenses and income might be. She was 83 at the time. I laughed when i did that thinking I really only needed to to about 2 to 3 years worth. 8 years later I am now only doing a 1 year budget cuz I think I cursed myself by making it for 20 years. HA! The amount of paperwork is endless. My mother is not in debt either and while she theoretically will never need medicaid and I will be able to pay for her care out of her smart investments, it is me now that is making the decisions on those investments and trying to maintain and grow what is coming in, because every year the facility hikes it's care costs and room costs and then there are the myriad of unknowns, like renting a hospital bed all of a sudden, or hiring a staff member to accompany us on doctor's visits, or padding to be bought for the floor by the bed in case of a fall which was never a worry before. SO the stress alone of making sure sure there is enough money every day for who knows how long is tough. I cannot even imagine the poor people (bad choice of words) who can't afford good care, have to deal with medicaid or get sick themselves so who is going to take over. There are just so many variables that no one can ever teach you. Anyway, I am taking the next few days to help my 17 yr old niece navigate her way though the college application process because her father is putting too much pressure on her so she needs her "neutral" uncle to intervene. It will give me something else to do, to think about, to arrange which will be a welcome change of pace. Hang in there everyone.

I too have "the dining room table" full of my mom's paperwork. Just when I spend 3 hours doing it, then the mailman brings the next batch, and she doesn't have any debts either. This is just all that it takes to pay for the multiple needs of the very elderly who has physical and mental challenges. And it's just not doing the bills, but it is budgeting the bills so that against the odds I can save her money to make sure she doesn't outlive her funds. But....her expenses are so high that I carry great worry about it. However, I did hire a senior financial consultant to see me (her) through to the best possible result when the money is gone. I think I've done everything I can to prepare for her future.

Good for your sdbike! You are making great strides. I may even clean my dining room table off tomorrow because of your recent post.

Still have not seen my mother and do not plan to until Monday. No calls from the facility and I have not called. It feels so freeing but I do feel about 1 or 2% guilt. I feel like I am saying a slow goodbye to my mom and telling her she has to realize I have to think about me too, even though I don't say that, just think it. I went to the gym for the first time in a long time today. And all I am doing is focusing on getting my health better for my 60th birthday trip around the world in 4 months. And I might get my scuba diving certificate to dive in the Maldives.

Good for you Sdbike! That was a good feeling to get that off your table and mind. Clutter can weigh heavy on us. I too get so tired of dealing with the paperwork of my dad and my own. Sounds like you are slowly getting a bit of your life back. I loved your comment to your friend.

BarbBrooklyn: I agree!

SD, good for you for taking steps!

You all are awesome. Today I finally cleaned off my dining room table of all of mom's (and some of my) medical notices, bills, forms, insurance notices, info, medicare info on what was billed for and why, doctor's updates, assisted living billing notices or care increases, attorney and accountant bills, tax receipts and returns, and on and on and on. They have been sitting there for almost of year. I would always take care of any immediate situations or bills and a lot i do electronically, but just filing the paper, and unopened nuisance letters away and constantly being reminded that I handle someone else's life who is not with me, in my home, such as an infant or young child, was too much. I got a lot sleep last night and woke up feeling pretty good. I did not plan on tackling any of it, but I picked up one thing and then another and hours later I have it all cleaned up. It all started out with my brother calling and asking where all the old Super 8 mm films were of our parents and us growing up from 1957 on. I found them and then having ransacked through the whole house to find them it started me seeing all the clutter and memorabilia I have and so it went, and now I have a better grasp of what is going on in my house and vow to continue to purge. Trying to put me first and not my mother is the only thing that will get my life back. Wish me luck on my ongoing purge and getting out more.

Cora, I think in some of those other cultures and other countries, women's lives are seen as worthy only of caregiving. Caregiving does not rise to the importance of being noticed by men. Single women especially are tasked with the care of elders. Unpaid of course. Not a rosy picture.

I have a career, a mortgage and my own retirement to tend to. My mom is being cared for in a nursing home, and we kids and grandkids visit.

sdbike, people in other countries and cultures take excellent care of their elders, but I guess it's not a top priority here in the US. Pretty sad, isn't it?

I like jayduck's comment about "I have to laugh," because being able to laugh at the situation (which most of the time is profoundly un-funny) is a blessing.

Sdbike, if it makes you feel any better, just being with an aging parent whose condition you can do nothing about would wear anyone down. I know a very kind and patient Catholic priest, who spent most of his ministry as a hospital chaplain. You could not swing a rag doll in this community without hitting someone, Catholic or not, who would sing Fr. D's praises -- how good he was to their sick or dying loved one, how much comfort and support he brought to the family, what an excellent listener he is, how he was able to line them up with needed resources, etc. This same wonderful man had a mother who suffered from dementia, and she was eventually placed at a local NH with a memory care facility. He told me that the hardest thing he ever had to do was visit with his mother for one hour each day, which was how he used his daily break from the hospital. He said he never knew what he was going to find when he arrived for his visit. His mother struck caregivers, broke windows, and more. He said he couldn't wait to get back to his patients at the hospital.

About starting a caregiving company: My sister and I were talking just yesterday about how maybe we need to start an "old people's co-op" with ourselves and friends, where the members pool their resources, living together or close to each other, and hire staff to care for them! Like a 60's commune, but with "Depends" and daily prune juice.

Wow, there are so many of us out there. With so many different situations. I went to see my mom to day, just to tell the home health care nurse I will only be coming in on Mondays now to see her and she understood. I did not feed her lunch today like i usually do after we redress her foot wound, which by the way is actually getting smaller, so that is a minor miracle. When I don't have to visit her, or I should say when I decide not to, it is like a weight off my shoulders and i can breathe, if even just for a few moments. Meanwhile I get a call today from my best friend who said his 95 yr. old mother called him this morning at 7am because she was having chest pains so he spend the whole day in the hospital with her. She can still care for herself. So he mused that we should start a caregiving company and I told him he caught me on a day when I am no longer going to care so much for my mother and we laughed. He said this aging bit is for the birds. His mother will stay overnight for observation, but he does not have sibling support either, even though he has them. What is up with families???? I really don't think we see this in other cultures, but who knows. Anyway, keep those cards and letters coming. I really feel some kindred spirits out there

Oh, how your description of your mother's stubbornness touched me. It sounded just like my mother. Especially the part about staying in her own home and dying. It does no good to remind her that none of us gets to make that choice. I live with my mother and have been trying now for two and a half years to just get her to go to an assisted living for a respite stay while I go to visit my daughters. She always backs out at the last minute. Last try, I actually got her to stay for 5 hours! (but I was with her for 3 of those).
At this point I have to laugh. And give up on the assisted living for now. I'm sure it will take a serious fall (more so than the last one where she broke her pelvis, but refused to stay at the hospital for a few days even) to force her to make the transition.Thank you so much for sharing some of your story.

I jumped in your boat about a year and a half ago. I now am the care giver for both of my parents ( 90 and 92), though I still work full time in NYC as a nurse. My commute is 3 hours a day. Mom has Parkinson's with hallucinations and some very unusual personality shifts. Sometimes she can be childlike, sometimes catatonic, sometimes some aberration of her former self. My Dad has short term memory loss. Both are frail physically and ambulate poorly . They sleep a lot. Right now I go there in the evening and make sure they have a good dinner, shop, do laundry and attend to most of the mail. I take them to doc appts. The absurd thing about this all is that I work with elders and have been giving families advice about caregiving for years. But as so many of you have said-"If you are not in our shoes you have no idea". I can do the physical caring ( even though I am 67 and tired) but I am being ripped apart by the emotional component. What I remember of my parents is nothing like this. What I know they would or would not accept in old age is not this. I have just contacted an agency to attempt to get a few hours of private pay a few times a week. This terrifies me, but I am backed against the wall. I can't keep this up and I don't want it to be a "them or me" scenario for who gets care. This has nothing to do with love or caring. I love them and care about them dearly. This is about our survival . I think-"oh my- what if this is in my future?"- dementia, Parkinson's . I feel like if I don't start living, my life will be over before I turn around and I will not have lived very well. I identify with all of you in the feelings of wanting it all over. I know the end game. I know it will never get easier, just different. Sometimes I feel like I am trapped in a box, fighting to get out and breathe. Yikes, who knew?
There are so many of us. Good thoughts to all of you.

@MollyBlooms: your last post is very similar to my story. I started to detach with love from my Mother 8 months ago. It has gotten better now. I feel less anxious now.

Regarding the last 2 posts written by Momhelper123 & sdbike: Well said and so true.

You wrote: " I feel a bit guilty that I want this all to be over with. I am jealous of my cousins who have their lives back. "
Don't feel guilt for that because what you are feeling is very normal. Even the envy or resentment towards or of others is normal. I resented my sisters who go along have no their usual normal lives even though it wasn't rational because they do not live here. But my therapist said...yes, that is normal. Only those who have walked this journey can ever know how hard it is. That is why support groups are so helpful as well as friends who have been there.

I used to want  everything done to a "t." I stopped when living my  elderly mother because it was going to be a no win situation.

Amen to mom helper123. You are 100% correct. I recall my brother telling me he does not feel sorry for me having to take care of mom because she is in a facility. Talk about a good belly laugh. No one and I mean no one can know or understand how much work there is to overseeing the care and finances of another human being, especially one with dementia unless they have done it also, for at least a full year if not more. I could say I could write a book, but so could thousands of other people caring for their loved ones. I have a couple of cousins who went through the same thing and we had each other to commiserate with. They understood and did not mind at all if I unloaded on them.
As far as Don'tAskforHandout's comments, I could never in a million years resign from taking care of my mother. There is no one else out there in my family who could do what I have done or would pay as much attention or worry about the details as me. All that being said, i have given notice to the facility that I will be seeing mom only once or twice a week from now on when i am in town. They laughed and said they would believe it when they saw it and I told them I had to for my own sanity and they finally understood.
And guilt is probably not the best definition of what I am feeling. I feel a bit guilty that I want this all to be over with. I am jealous of my cousins who have their lives back. But in the end, I will be able to say that I was there for my mother in her time of need and was able to spend quality time with her, and I will never have to feel guilty about not doing enough.

"GUILT" - Let's talk about the common thread of having some degree of guilt because you think there is, and yet, even MORE that you could do. I would offer up to all of us the following: The ones who LEAST should feel any guilt are those of us who are posting on this blog. Why? Because we are obviously the ONLY CONCERNED members of the family. The others (who should feel guilt) are those who are so removed from "the loved one's care" that they don't even know what to feel guilty about. THEY THINK that if the loved one is living in a Residence, that there is NOTHING LEFT to do for Mom or Dad. Let's all have a good belly laugh about that. I may not physically visit my Mother in MemoryCare every day, but YESTERDAY I spent half a day working on getting her expensive RX for 1/10th the price through a GoodRX pharmacy, and today I'll work on that endless load of her paperwork.

I suggest that we must "tamp down" any feelings of guilt that we are not doing more - We are doing PLENTY.

It's very hard to not feel responsible when you have lived a good part of your life in full-responsibility mode. For years, I lived with my mother when, from a physical standpoint, she was very functional and independent. Emotionally, she was not in such good shape, especially after my father passed. Once that happened, she turned to me as her emotional anchor. She frequently had me do little things for her that both of us knew she was fully capable of doing for herself, but I went along, believing (as I still do) that having another person do these little tasks reassured her that she was loved and cared for. Now that she has had a severe stroke, she is being cared for at home round the clock. Her caregivers, thank the Lord! are great, but not one is perfect, and I also see things I would do differently. To add to the mix, my mother continues to call for me even when a caregiver is right at her side. It's just what she is used to, and I am used to feeling responsible/guilty. I don't have an easy answer for you. I find myself going through a process -- is it detaching from her? mourning her? -- and even after six months I don't think I've made much progress. But I'm working on it.

If it's that big a problem, I personally would resign as caregiver and would just wash my hands of the situation. Not everyone is cut out for this job, and it sounds to me like she probably needs to be in a facility but one that's safe where no one will abuse her

I know that you love your mom. There are no good or right answers. Whatever you choose to do is the right answer for you.

Question to sdbike: How old is your Mother? My circumstance fairly parallels yours. My mother (now almost 96 and in memorycare for the past 2 years) had a long history of mental illness (paranoia) which I have monitored for 30 years. I retired at 60 (Healthcare Administrator in Los Angeles) to move to Orange County and purchase a unit next door to my mother ten years ago. (In LA she had lived a few miles from me for most of her elderly years). I was able to monitor her taking meds to keep the delusions under control for all those years. The living next door situation worked out well the first 6 years and then at age 92 she could no longer thrive in her unit alone despite my daily efforts, so then we moved her to a lovely Independent/Assisted Living a mile away. After 2 years there they had me move her out since they were not a locked Memorycare facility and she had begun to wander in the middle of the night and knock on her neighbor's doors to tell them there was a fire in the building. I also have two sisters who do zero, and I guess since they know I WILL tend to every detail, it makes them feel complacent. I even asked them to help plan the final arrangements (mandatory for the Memorycare facility) and they both said NO. So my husband says "forget about them, it's easier for us to do everything". He helps as necessary but the burden is on me. I too am very close to the facility staff, and our open communication has certainly helped to create the best possible health and happiness environment for her. I am very impressed with the "Reminiscence Community"; the staff is very loving and the healthcare delivery and vigilance has been a real luxury. I just had 2 level spine fusion last year, and it made transporting her a danger to me. So after all those years of super difficult (combative) trips to doctors and dentists, it is pretty much set up now to bring the services TO her. The ER is there for the big emergencies. I have a mobile DDS/hygienist coming to her now. She was more difficult to deal with all those previous years, but now that her dementia is severe (she is also blind from a stroke and wheelchair bound), she is more appreciative of me, but that is new. I always say that on Facebook they do that graphic where the words you post the most appear the largest, and I know if I did it (which I won't) that my BIG word would be "Mother" because she is my major concern. I am 71 now and do have to deal with my own life and health issues so I talk on the phone to her, but I now, to protect me, visit once or twice a week. I do trust her caremanagers, but there are still a ton of details (but less now because she does have to be fed and basically everything done for her.) I manage everything but the "heavy lifting" is definitely done by the caremanagers. Bottom line is this: IF something happens to you, sdbike, then you will be no good to her, so it is important to try and arrange for you to do less. Also, have you looked down the road to when (if) the money runs out for Memorycare? I think my mother, despite all of her challenges, could live to 100, so I am putting the pieces together (lots of paperwork) for her to be provided for when she is 97 years old. It is not easy, and I located a highly touted (by reliable sources) Senior Financial and Living Advisor who has guided me through the process of preparing for when the money runs out. I worked in Internal Medicine healthcare administration for 13 years in LA, but the advisor knows exactly the challenges that people like us face. His goal is my goal - and that is to provide a safety net in the best possible situation for her health, happiness, and financial status. As others have said (regarding zero help from siblings), it would have been nice to have had a respite once in a while, but when Mother is gone, my mind will be clear, and they will need to live with the sadness and guilt (maybe?) of knowing they did nothing .. and I mean nothing. It sounds like you have put together the best possible situation for your Mother, but reclaim some of that for you, because you count too!

Sending a big hug.

This is hard. And slow. And long.

People think that you are not doing anything when a parent is in a facility. HAahahahahahha!

From what you have written, you are doing a great job for her and also for yourself. I am glad you are seeing a therapist and taking care of yourself.

I agree with backing off on the visits. I visited my mom every day--until I realized that five minutes after I left she really didn't remember that I had been there--and conversely, would never know that I had not just been there five minutes before. Now I average about every three days.

I manage the money. It is a big job. I almost weep over the taxes--paid quarterly...

As anyone would say, and I am sure your therapist has said, you only live once. Make a list of what YOU want out of your life, and make THAT happen. We aren't getting any younger.

sdbike

I see a lot of similarities between us. I also have been the sole caregiver for my mom, sibling is worthless. How old is mom? How long do you think she has? Is she qualified for hospice at all? When someone is under hospice care - they can hire a personal home health aide that can assist in the areas that the are "falling into the cracks". Or if mom has the funds, maybe you can hire a personal assistant to help.

My mom is 94, has Alzheimer's and bladder cancer. I took care of her long distance for many years, she lived with me for 2 years and now is in memory care. I feel the same as you, for what mom is paying I also see things that fall through the cracks. It's just the way things are in assisted living - there are too many residents for the one-on-one care. Maybe she is ready for a nursing home - she will receive more one-on-one care.

No offense here, but it does sound like you are on a waiting mission. Caregiving takes over your life - I agree with many others on this forum; take a step back, accept things won't be perfect. I never thought my mom would live to be 94 - how long do you want to be waiting? I was told in December she had 2 months, she is still with us.

Do something different, join an activity or a gym, visit old friends, clear your head of caregiving. Caregiving is all consuming and stressful. There is a life outside of it. When I placed my mom in memory care, I felt very guilty. But I was so burned out, I was ready to have my life back. Get that bucket list out  and start concentrating on that.

Thanks for your responses since my last one. To respond to your advice, yes I am in therapy and have been for the past 5 years for this and many many other years for other stuff. I have meditated quite extensively in the past as well as done yoga which when my physical therapy progresses, I will take that back up. Interesting one of you brought up bleeding from the orafices. Yes that actually happened a few months ago, twice, and we put her on hospice, only to take her off month or so later as it never happened again and the hospice nurses were not managing her foot wound/ulcer in the manner she was used to, as well as she just wasn't dying. Anyway, to let you all know, I have told the staff at the facility I will be visiting less and told them why and they fully understand. As far as giving all our assets away by putting her in a nursing home, that is a big fat NO. That will be our income in retirement and my siblings and I split everything equally and I am managing my mother's money quite effectively, growing it so we are all taken care of too. My mother would never want her money to be drained in any way shape or form and wanted us to have it. So I am proud that I have continued her investment strategy and even grew it. So between therapy, being able to converse with all of you and listen to your sage advice, I am taking more time for myself and trusting that she is well taken care of and no one's life is perfect. I have to put myself first in order to put her in any position at all. Thank you to all of you.

I understand how you feel. My mom had dementia and almost every time I visited her, she would tell some pretty fantastic stories. Some I knew were hallucinatory, but I still wonder whether some were true in some form. She passed in November so I'll never know now.

I was on friendly terms with the staff, but they were not my second family. it was a good facility and mom got good care. But she had a mind of her own. Yes, she fell. I was always notified when she did. If serious enough, she'd be taken to the ER. I worried about her, but it did not consume my life because I am also caregiving to my husband. Of course, I could have hired private care for my mom, it would have been $15.00 per hour, self-pay.

At our age, we are responsible for ourselves. I have all of your symptoms. My house is a mess. I'm crabby just about all the time. I get out of bed each morning, but just barely. I have a constant sinking feeling that this is NOT the way I want to live my life. I am bound and determined to get counseling and will speak to my doctor about it. Is this an option for you?

Put her in a nursing home--they will take all of her assets but when she dies your siblings will fight over the money anyway so just let the facility have it all and get your own life back, and you won't have to worry about your siblings squabbling over money. I don't care how much she has -- it's not worth sacrificing your own life and career, and believe me brothers and sisters will fight like dogs to get a piece of the pie after she dies.