Does anyone have feelings of guilt that won't let you move on?

Just thought I would give you all an update on my MIL situation. I was able to get the Medicaid mountains removed. I have not applied for it yet because she still has some money left. Not a lot, so it is coming up soon. I am not feeling the guilt like I was, she was diagnosed with Alzheimer's and Parkinson's so I know that she is in the best place right now. I still go up there a lot, but not quite like I was. My husband (her son) is still alive, but honestly, she knew and I know that she would not have had the care that she has had it not been me.

Thank you all so much for your encouragement and advice. It is still hard but better, if that makes sense.

I am going through the same situation. I had to have my 93 yr old mother taken to the hospital after several falls in a hour. Scary for sure! She lives in a little cottage we put next to our house on our acreage. It's been a long 10 yrs of me running over there several times a day to assist with "whatever" and dealing with her attitude issues. She had been getting worse and I could see it even if I didn't admit it to anyone or myself. From the hospital we went to rehab which ended after 2 episodes the last one where she stopped breathing. We thought she was gone but she rallied. We left rehab for the NH since I can not lift her. I did call the Senior Services Social Worker to see if I could get full time help in her home, but she only qualifies for 20 hours a week which will not solve my problem of lifting and transferring. I would have rather brought her home, but it is not possible or realistic. I do understand why they ask the family to stay away now. I was there every day for the first 2 weeks and she really didn't adjust until I started spacing my visits. Now she is doing better, but still acts out when I show up. She gets the 24/7 attention she needs. The staff is wonderful and reports to me constantly if there is an issue they feel I need to know, like her being sick or her dementia is bad that day. I am getting better about not feeling so guilty but this is an uphill battle for sure. I wish you every bit of luck fighting this debilitating feeling of guilt. I have read so many posts from others
on this website that have helped me over the years and now this subject is in my headlights too. The trick is making yourself follow the excellent advice to help yourself!

I was in the same situation as you 6 months ago. Mom was living at a handicap apartment and could at least move about and get herself to the bathroom and dress and undress herself and bathe with someone there. I provided everything else for her. Then, boom, one day she woke up and everything went wrong with her already failing health, she went to the ER and she has never been able to rehabilitate. So, I had to make the decisions, work with the advice of her family physician and all the hospital and skilled nursing personnel and get her placement into a long term care bed. The financial aspect of applying for Medicaid, spending down, getting the payment trusts in place was a four month ordeal not to mention handling all of her financial and healthcare bills, etc. I am worn out and frustrated and depressed all the time. I know i did the right thing, no other viable or financial choice. Please don't let your guilt force you into a situation you cannot handle physically or financially and one that may not be healthy for your MIL either. Trust me, after you get everything done, you will feel some relief. Also, you need to have a meeting with her children, lay out everything needing to be done and assign them some duties to help get this done. Good luck and God Bless.

Sharon, my condolences to you on the loss of your mother. It is never easy, no matter how old they are. Forgive me for not mentioning it in my last post.
God bless you!

Thank you to ALL of you that responded to my post. I needed to vent and wasn't expecting to hear about so many others feeling the same way as me. I do not work away from home. I have an art studio in my home, and before everything happened with my MIL I stayed busy doing that. Now, not only do I not have the time to do my art, I don't even feel like doing it.

My MIL will be running out of money in a few months, so I went to the business office at the NH and talked to them about how the applying for Medicaid process works. I found out that we have a problem in that my MIL had loaned a fairly large chunk of money to my brother in law and she would be penalized for that amount of money, which means that she will have to come home or we make the monthly payments ourselves until that amount was put back, or my BIL pay back what he owes. Well, the last won't happen in this century, so I am having to also hire an attorney to get through this. I do not feel like I qualify for this job, I feel like I am in over my head. In in the meantime, my MIL continues with her demands!

I know that I have got to STOP this psychotic behavior....I also realize that I cannot do it on my own and am crying out to a higher power! I do appreciate the prayers, and all of you that posted the same feelings that I am having, I will pray for you too. As it says in Job 42:10, And the Lord turned the captivity of Job, when he prayed for his friends. I do love my MIL but I am not really doing her any good by behaving the way I am. I want to be there for her and make sure that she is getting the care that she needs, but at the rate I am going, I am wearing myself slap out!

Thank you to ALL of you that responded to my post. I needed to vent and wasn't expecting to hear about so many others feeling the same way as me. I do not work away from home. I have an art studio in my home, and before everything happened with my MIL I stayed busy doing that. Now, not only do I not have the time to do my art, I don't even feel like doing it.

My MIL will be running out of money in a few months, so I went to the business office at the NH and talked to them about how the applying for Medicaid process works. I found out that we have a problem in that my MIL had loaned a fairly large chunk of money to my brother in law and she would be penalized for that amount of money, which means that she will have to come home or we make the monthly payments ourselves until that amount was put back, or my BIL pay back what he owes. Well, the last won't happen in this century, so I am having to also hire an attorney to get through this. I do not feel like I qualify for this job, I feel like I am in over my head. In in the meantime, my MIL continues with her demands!

I know that I have got to STOP this psychotic behavior....I also realize that I cannot do it on my own and am crying out to a higher power! I do appreciate the prayers, and all of you that posted the same feelings that I am having, I will pray for you too. As it says in Job 42:10, And the Lord turned the captivity of Job, when he prayed for his friends. I do love my MIL but I am not really doing her any good by behaving the way I am. I want to be there for her and make sure that she is getting the care that she needs, but at the rate I am going, I am wearing myself slap out!

Just curious but why are u doing it all. Where is her son or even other children. My suggestion is to have her evaluated while in rehab. If it's found she qualifies for long-term care have her admitted right from rehab. Hopefully there is a long-term facility connected to rehab. You cannot do it all.

Seek out a psychiatrist and get an anti-anxiety med.

Women are socialized to be 'nice'. Be 'helpful'. Be 'nurturing'. To fix it all, to FIX. IT. ALL. Yes, some of it is the maternal instinct, hunter/gatherer type things. But I have said some harsh things here, and I will say some again: You cannot make anybody else's life ALL BETTER. Your m-i-l is on a downhill slide, and you can't stop it, hope she 'improves', or anything YOU do will make her all better. She will be happy, in-between, or miserable no matter where she is living if she has dementia.....I will tell you all right here my mother hated being a mother. She was a total dope who got married and didn't even know how babies were born, and she and my dad - their lives were ruined by my birth. I was raised with love part time with my grandmother. They beat me down, physically and mentally, all my life, dad died, and mom did GREAT. She got dementia, *I* was the only caregiver, and when it came time to get her on Medicaid and into a nursing home, I felt re-born. I felt like I had one more short window of love, and life, and freedom ahead when she died. It was a HUGE relief. (this doesn't mean I didn't grieve. not at all, but another subject). I have no one myself. I don't know what will happen to me. But I would not ruin my family's life.

(I love AgingCare.com!) These posts hit home for me - I'm facing future caregiving issues with my stubborn parents (ages 90 & 87). Our folks get irritable & demanding, I think, because they didn't think they were going to get this old & debilitated. Also, I don't think many of them had to become caregivers for their parents. If they did, they perhaps would have prepared better or had better attitudes toward family members. This is still a new phase in aging that is very complicated, what with laws, finances, & regulations. This rant may not be helpful, but my hope is that caregivers will be easier on themselves because we are all finding our way they this miasma.

Yes, I think we all feel guilty and wonder if we could have done more. The best move I made was to hire someone to provide companion care to my father to free me up two days a week. He still lives independently but is on a cusp. I have to make the same decision this year to bring him into my home or into another place. I'm exhausted when I get home from his house, trying to cover all the loose ends for him and just communicating. It would be a relief to know he is in good hands even if something should happen to me. I wish I could find a social outlet for him that he enjoyed. Can't get my siblings to visit and I don't think they feel any guilt at all, even though he has ALWAYS been there for them.

The comments about keeping a balance in your life--providing time for yourself and your needs--is very important in dealing with feelings of guilt or depression, I think. When I was made POA for finances and health care for two long-time friends of mine who had no children or nearby relatives, I started visiting AL places with memory care apartments. The wife was diagnosed with frontal-temporal dementia some months before and the husband had short term memory issues and could not remember to take care of himself with meds. I finally found a place with a choice of a two bedroom, one bedroom or efficiency apartment in their memory care. When the time came and the wife became incontinent and starting to wander, I was able to get the husband to agree to the one bedroom apartment, though the husband kept forgetting he had agreed to this so we had he discussion 4 times, including the day of the move. He was convinced they could continue living on their own, but that was impossible.
The movers and I were able to make their new apartment look just like their bedroom and den back at the their condo and when they got there after going out for breakfast with another friend and then to have their nails done, the husband saw his recliner, tv, couch, table and lamp, pictures on the wall, etc and sat down with a sigh of relief and has been happy ever since. In home care for the wife was going to cost $13,000 a month. This apartment would cost $11,000 a month for the two of them, $7200 now that that wife has passed and just the husband is there. He is happy with the new friends he has at meal time and that he doesn't have to take care of a thing. I am happy with the level of care they received and he receives now. The health nurses fill me in when I talk with them about how my friend is doing and I tell them the results when I take him to the dentist or eye doctor. Their daily records are invaluable and reassure me they are paying attention. Going through their 47 years of accumulated treasures and getting rid of all their furniture and belongings is a big job. I have learned a lot more about them and their lives and it only makes me appreciate them even more. My friend is a well-educated black man and we joke about being "brothers of another color." He is not family, but feels like it and to be able to play this role in his life is an honor. But, having someone else do all the daily care is a huge relief. Doing all this other, behind-the-scenes stuff is a big enough job. It's a good thing I am retired and have the time to use. It feels like another job and the only pay is the feeling of getting it right. Plus whatever merit it brings after we die.

Dear bag1115,

I'm so sorry to hear about what is happening with your MIL. You are an angel for caring so much about her. It is a lot responsibility for one person to bear. And a struggle to do the right thing. For your own health and well being I hope you can find the right balance. I know it will not be easy. For myself, I ended up doing everything as well. And I tell you, the anger, resentment only escalated. By year three, I became indifferent. I had no more fight left in me. My dad has passed now. I still have guilt about all the things I could have done differently. I hope you will consider counseling or a support group for yourself. Do not try to go this alone. Try to access any community resources you can to help your MIL. Take care and I hope things work out.

My heart goes out to you--and this is your MIL?????? Where is her son in all this? (Excuse me for being insensitive, perhaps he has passed away) but if he is around, he should be shouldering a lot more.
My own hubby sees his mom when I FREAK OUT AT HIM and make him call/go see her. I am not allowed at her house (too huge of a backstory) so she only lets a very few people in. He is her POA and does occasionally look at her financials, but he could NOT care less about her health, what she's up to....and it's sad. I am seeing my only son parroting this behavior with me.
Guilt is so free floating--you're probably looking ahead and behind and feeling guilty for everything. Therapy has helped me tremendously in dealing with that "free floating" guilt. You can do so much...and then no more. After you've hit your "limit" you are just hurting yourself. And you can (obviously!) do quite a bit.
Yes, you want to give your MIL the best, but you realistically cannot. That is sadly her burden to dear. You can make sure she is safe, loved, cared for in the most basic ways and that's about it. You can't MAKE her feel happy about it. I hope you can place her in a safe, warm environment and cut your visits to a reasonable length of time. You mention still having kids at home? My kids HATED my caring for grandpa...and they were teenagers! It didn't last very long, but I spent so much time with Gpa and the kids were resentful (little brats :) )
I wish you luck. This is a huge thing for you. I admire someone who can love an inlaw like that. You're amazing!!

First you are a great person to be doing all this & MIL saw that, so you are POA - she trusts you above her own children to do the right thing for - that means you take the right steps - however she is only 1 person & the needs of others must be balanced with hers - this includes your needs to be safe & not injure yourself taking care of her

You feel no matter what you do her money will be eaten up so balance where she would be best - hiring 2 people is not reasonable so if going to her home she will need a hoyerlift etc -

Hire a professional who doesn't stand to make money in anyway do an assessment of her home & her mobility to help you decide - that way you should not have any guilt in your final say as you can say to yourself 'I did everything possible'

If she has some dementia then an earlier move to a NH can be better for HER because she has time to get used to it & start participating in activities that will maximize her adjustment to her new way of life

It sound like MIL is a good hand with the guilt trip but acting out of guilt may not be in her best interest but getting all the information before you make your choice is -

Also stop going to see her every day by taking 1 day a week off for your own mental health - she is important BUT SO ARE YOU & you deserve time for what you want to do - don't feel guilty about this either because if you burn out then some else will have to take over who may not be as loving as you are .... so this time off will benefit you both -

You are doing more for your MIL than most children do for their parents SO STOP FEELING GUILTY BUT FEEL PROUD OF YOURSELF & look yourself in the eye while 'I have done very well by her & I will not feel guilty anymore' - hope this helps

There are lots of good comments above. I wanted to add one more thing on your question about guilt. Unexplained guilt can exist with a person NO MATTER what you do. There are plenty of people who post here who do bring their loved ones home, spend all their time to their care, stay up around the clock, never get respite care, spend all of their funds, and literally devote their life to their disabled loved one....BUT THEY STILL FEEL GUILTY. (Or at least, that's what they say they feel.) It's quite common. So, I'd consider that you could carry the guilt no matter which choice you make. That's why I'd try to get a handle on it and consider what is reasonable. Only you can control that.

You have to stop visiting her every day! Cut back to every other day for a week or two, and then every 3 days. She has become too dependent on you to constantly be there. You shouldn't feel guilty, but I know you can't help that. You can get counseling on line if you can't leave to get to a doctor. But the best thing for you now would be speaking with a therapist or counselor or psychologist about twice per week.

Caregivers are truly one of the unsung heroes. There are is so much more to the role than we realize until we get in the middle of it all. A lot of good comments posted so I'm just going to add some pointers of my own.
I get very little help from the other 4 siblings, seems to be very common in most families, so at least we should all have a little comfort in that :) but not really, right?
I am not POA or on the health care proxy which adds a whole different dynamic to the situation
Mom has lived with me for 3 1/2 years now and has declined rapidly in the past 9 plus months. She is in the later stages of dementia.
I am going through the Medicaid process now (Community Medicaid) due to the POA announcing she can provide no more of mom's money to support her care. Also I am located in New York, not all states have Community Medicaid.
I hired a good care manager, she is worth the money! It's has been a process and it's rather exhausting but I did get approved for 24/7 care. So now the task at hand is working with one of their agencies to find the required help. In the meantime, however, I can become an employee of this agency and get paid for my time while we are looking for the right people and filling all the time slots.
My mom's wishes were always this - do not ever put me in a nursing home. So, that is what I am doing. Will I succeed to the end? I don't know but I will give it everything I have.
I learned quickly not to sacrifice my own health. So that comes first along side mom's care. It's been a struggle but it's working. I, unlike the other siblings, will have no regrets/guilt.
Bottom line is, you must take care of yourself and know your limits, which it appears you do. Do what your gut tells you to do. You are stressing over your guilt about not being there for your mom and we all understand that. But don't add that guilt to what is going on now. That is very unfair to you! Be kind to yourself. Don't beat yourself up. Love yourself more than anyone else. That will help you get through the trying times. Take care of yourself and let us know how you are doing.

Thank you for your post and all the beautiful and moving responses other people have also contributed.
It sounds like you intellectually already know what you need to do, but emotionally finding the will to do it is hard because you're projecting your regrets with your own mother onto your M I L. Until you conquer that and set genuine boundaries for yourself, nothing will change for you. I really understand what you are feeling, and it is so hard, but you have to separate the things you cannot control from the things you can control. In this case the only thing you can control is your own behavioral agreement to continue or discontinue this arrangement.

I think it would be really beneficial for you to talk to a counselor to help untangle your feelings toward your own mother and untangle your feelings of obligation to your MIL and see both of those relationships in separate columns. Once you've worked through that internally, and found some measure of closure with your own mother, I suspect you will be more at peace with setting boundaries without guilt. Good luck and blessings to you and everyone on this thread. Xo

To me, guilt is when you have done something wrong and you need to make amends. It sounds to me that you have done absolutely all you could, at the expense of your mental health, to take care of your husband's mother. The posts about getting some counseling to help you deal with these unearned feelings of guilt are right on. You must start taking care of yourself instead. You've done all you could for her. She is in a safe place and well taken care of, and whether she stays there or moves to another facility, she'll still be safe and cared for.  As the social worker at Hospice told me (such a valuable resource), she's never known one person in all her years with Hospice who was happy about being moved to a nursing home or an assisted living home.  By the way, your visiting every single day and accommodating every single wish she has is not going to help with her being able to accept the reality of her situation.  Cut back a little; think of yourself and your mental health.  

I am caregiver with mother living with me. I don't get any help from one brother who lives 20 minutes away, his wife is evil towards me my brother goes along with her and they think I'm supposed to do this all for free while my mothers monthly checks build up and they get more money when she passes away. Their insane!!!!

I'm in the exact boat, too. My mother was diagnosed with dementia in 2012 and eventually had to be placed in an expensive adult residential care home. Neuropsych testing at the time of placement there showed total mental incapacity, but with the excellent care she gets there, her cognition seems to have improved. I'm managing all of her financial decisions and sadly, she has spent down everything to live in the care home. The next choice is to sell her home to which she is adamantly opposed. I'm still working and cannot move in with her since she lives 2,500 miles away. Whenever I visit, there is inevitably an argument about me trying to "control " her.
I truly believe that selling the house is my only option, but I have tremendous guilt about that. She would rather be back home and having me care for her. The guilt-driven part of me wonders if I should.

She's not your mother. She's your husband's mother! What is his involvement in all of this? He should be dealing with her and her situation, not you. Let her go, set boundaries, release the guilt and live your own life! If you can't, then see a therapist to help you get free!

You are clearly a daughter in law that cares. One thing you MUST establish with your MIL is that there is no possibility of her going home. NONE!

Do you work? Because if you do, then you can't give her the care she needs.

Is there a way that she could live with you and people come in to help?

If there is, then set a room up at yours, providing you set out ground rules and you still get to live your life.

It's a dignity thing. I have to be honest, would you like to live in a care home, it's a last resort.

Finally, whatever decision you make, do not put your own mental health at risk. As you say, she's not YOUR mother.

I'm sorry about the loss of your mother. I hate ALS. It's as cruel as dementia and particularly vicious.

Since you acknowledge that it's really the guilt you have from the way you handled your mother's decline, I would try to seek professional help with it. It's not even rational to feel guilty about your MIL. You are doing loads of work, thinking of her care and devoting most of your waking hours to her welfare. Ruining your own health worrying about something that doesn't exist seems counter productive. Who takes care of matters if you become sick and unable? I'd work on learning to feel proud when you work hard and advocate for a loved one. People who do this should be able to find peace. Her journey may be for a while now. I'd try not to burn out.

You stated that you have POA, but, what about Healthcare POA? If so, I think you have already surmised that keeping MIL at home with her condition is not feasible. If she needs hands on care around the clock, I'd discuss how that can be accomplished with professionals so you know all that would be involved and if it's feasible in your situation. Keeping in mind that bringiing home a person with dementia, may not make them happy. I'd read a lot about how dementia patients have unrealistic expectations about how they will be just fine. Even if they are immobile and need help with all daily activities.

I'd read a lot of threads on this site about how family members did this and how it often works out. I think many people underestimate the enormity of the workload and stress that is involved. I hope you can find some peace.

Thank you so much for this post!
At the moment I am in
Exactly the same place you were...
Hard decision.. ty again

I feel the same way but add in trapped. My mom lived alone an hour away, problem because she is a type 1 diabetic that refused to take care of herself. Well the last few years have been rough, basicly pushing me put of her life for new friends. Very complicated story. I basically had decided to walk away, she was found in a Diabetic coma in January 2016. My life has not been my own since. After months of rehab stays, hospital stays and doctors visit I finally got the doctors to say yes she suffered permit brain damage and is not ok to take care of herself. I quickly realized I could not take physical care of her. It was a fight to take her medication, fight to bath and fight to eat. Everyday is taking care of her affairs, bills, and health. After two trys finally found an ALF memory care that she settled into. I try to get back to my life, as I haven't been able to work full-time this past year, my bills are behind, I am depressed or angry most of the time (so of course marriage is not doing well). I try to cut back on my visit but every time I do I get phone calls that some thing happened; she having a bad day, she fallen or something. There is no one but me to call, me brother lives states away and there is no other family here willing to help even just to give me a break.

So how do you cut back when you are the one only for the ALF and doctors to call? I admit I can't do it all, I feel like I am failing myself, in order to save her. When I say things to anyone they don't understand and say don't do so much. Mom can't do for herself anymore (decision, health, finances).

I think we all suffer from guilt as care givers, we want to do our best but it is difficult because usually the person we are caring for doesn't appreciate or understand why we are in charge of their lives.

Hi Friend
I have just gone through what you are going through only a wee bit different. My mom lived with us for 5+ years. As soon as she and my dad (who passed away 6 months later) arrived we went to an Elder Lawyer. I became POA and Representative Payee (Social Security). Mom was having back problems and I took her to ER. Brought her home from the hospital with medication and from there everything went backwards into a domino effect. Her dementia went into full throttle, talking for over a day and 1/2 non-stop. Brought her to our family physician, back to ER, admitted and then to the Nursing Home for rehab. Have you talked to the caring physician at the Nursing Home? Mine recommended she stay as I was no longer able to care for her. Also given her age of 94 and Sundowner's Alzheimer. Something I needed to make a decision about. Do I bring her home or keep her in nursing home. Not an easy decision.

She only got as far as they could get her in 10 days so I decided to enroll her in the extended care program for dementia patients. I explained everything to mom about not being able to lift her or care for her. I also went everyday, made sure she ate breakfast and was clean and dressed, etc.

I had the worst Guilt Feelings and blamed myself for her being in the nursing home. I would come home and cry as I was already on depression and anxiety medication just from dealing with all the paperwork for all those years. Having admitted her in the Nursing Home brought me into deeper depression figuring if I hadn't taken her to the ER she may still be with me and able to do things for herself. I couldn't get past the guilt. She was admitted to Nursing in Home in May. By August I called Hospice to look at her as she wasn't opening her eyes when I visited and her breathing was off and they put her on Hospice. My doctor advised me not to go everyday to the Nursing Home as it was affecting my health and depression so I cut back to twice a week. Also Hospice offered a Social Worker who was more like a therapist who I have to say got me through this rough time. Feeling guilty and overwhelmed by all the paperwork, lawyers, what you have to produce to get your loved one on Medicaid is draining and it doesn't end there. She finally got on Medicaid in December. It took me almost 9 months to finally rid myself of guilt and increased depression medicine. I was never on any anxiety medication or depression medication until my parents moved in with me, the bad part is I can never get off of them. My doctor recommended I go to a therapist but what would I do with Mom while I was in these appointments?

As far as having help at home once you are approved for Medicaid, Fidelis will come and provide a nurse to bathe, dress and do all that. Usually there is a person that helps you apply for Medicaid and the spend down at the Nursing Home. We however, went to a lawyer and it was worth $15,000 because there was so much involved and I kept good records thank god.

There were some things that were puzzling me about your MIL. Age, condition, can she walk at all?

Sadly...Mom passed away this past Saturday and she had the best care 24 hrs. a day at the Nursing Home.

It's not an easy decision to make and may God guide you through this time and make the decisions necessary. I will pray for you.

God Bless ~ Sharon

Well, if you really "can't help it," then there isn't much point in getting advice, is there? But I think it is a very healthy sign that you recognize the dynamic of your guilt feelings and you can look at them logically. You can help it, but it might not be easy.

I don't know who "everyone" is, but I suspect they are right. Is there one of them you particularly respect that you could ask, help me figure out what I can stop doing? If you are doing too much, you need to do less, for the sake of your sanity and your family's well-being.

If this woman needs 2 person care around the clock, I don't think she is a good candidate for living in a private home -- hers or yours. Medicaid would help with some home care, but certainly not 24 hours/day for one person, let alone two! That is because it is more cost-efficient to pay for a care center that is set up to deal with MIL's issues. They not only have two people available at all times, but 3 or 4 if that is ever needed.

Do you like the facility she is in? Are there others in your area that might be worth checking out?

This is such a difficult spot to be in! I hope you can overcome your guilt feelings (that have to do with another situation altogether) and make decisions that are best for everyone. If the guilt is really getting in your way of moving ahead, perhaps a few sessions with a counselor might get you started.

Let us know how this all works out.

I agree with kimber166. She is fortunate to have someone like you . My sister in law don't help with my mother at all.