Help with Guilt

Trying.My.Best

I am a 55 y/o working adult with a very stressful and demanding job responsibilities. I am also the only caregiver for my LO who has Alzheimer''s/Dementia. My LO is 85 y/o and lives alone in a 2 story townhome with stairs. This past year my LO has fallen several times (not on the stairs) and this last time ended up in a Rehab Hospital for two weeks because they could no longer get up from the floor (lack of strength). Upon discharge, I was forced to make a decision to place my LO in an ALF or bring back home with a caregiver as the hospital staff told me being alone was no longer an option. Because the discharge happened so soon, I placed my LO in an ALF and the adjustment has not gone very well. My LO has been there 4 weeks and has become uncommunicative and angry at me, has no recollection of what happened or why they are there. I have a lot of guilt even though i know my LO is getting the best of care. I call every other day and speak to the staff to check up on things. However, due to COVID I am unable to visit which has made matters worse. I have not been able to sleep for the past 4 weeks and I am constantly worrying. I believe my LO is somewhere between stage 1-2 with this decease and does need 24 hour supervision. How does one live with this constant guilt? Every day I wake up in the middle of the night second guessing what I did and think about bringing my LO back to their home of 25 years with a 24 hour caregiver, but I am also worried the caregiver situation will be a revolving door and will eventually find myself in worse place. My LO tells me how sad they are every time we speak but I am not sure happiness will ever be found again with ALZ. I know this decease only gets worse with time and worry about making changes. How does one know you are making the right decision for your LO? With this disease, I find the worse part is the not knowing when to make the right decision for your LO, Anyone else found themselves in this situation?

Kitchen_Cat

I'm sorry I don't have some helpful advice for you, but I can say that only a wonderful, loving person would have ever written your post. She's in good hands with you, and she's so lucky to be. (((You're a good egg, so try to go easy on yourself)))

Neverends

Hello and welcome to the club. I feel for you and I relate totally. I retired early to care for my 87 year old mother. She has been with me for 5 plus years. I worked  as a nurse in LTC for 17 years. I had a chance to place her where  I worked when I was still working.  Needless to say I opted out. I chose to retire early and care for her myself. After all I was an experienced geriatric  nurse with loads  of experience. Boy was I wrong. I've been retired for two years. I'm depressed, never get a good night's sleep because  mother is up. It's all about her and working around her. She doesn't know me and is total care. She has aggressive  behaviors on a pretty regular basis.  It takes an Army  to care for someone with her extensive needs and there's thousands  like her.That's where LTC comes to save the day so to speak.. Everything  your loved one needs is there  24 hr supervision, nurses , doctors ,activities ,meals, a warm and safe place other residents  who are like your loved one. It takes time to adjust,some take more time than others but eventually  most of them adjust and become close to the staff. Their minds are broken and pretty soon they forget why their there.  At home care is an option but your so right about the revolving door. We are experiencing  a nursing shortage  everywhere   I've  tried to get someone to come for 1 day a week so I can catch  a break. Nope,not happening  there aren't enough bodies  to fill the demand. Aging in place is a wonderful idea to those  who aren't doing  it. It's a downward spiral for your LO and most especially  for you. I submitted  an application  for her to be placed. That was 18 months ago and counting.  It won't be anytime soon. All of us carry around the guilt rest assured. Just try to put things  in perspective.  Leave things as they are you will open up Pandoras box if you decide otherwise. So sorry to be negative but I wish I could go back in time and have my mother placed. Sending hugs be strong.Your loved one is where they need to be.

Quilting brings calm

You didn’t do this to him.  You did this for him. He cannot stay by himself even if he lived in a one story house. You cannot care for him 24:7 and it’s not a good time to try to hire reliable at home caregivers. 

It takes 3-6 months for a person to adjust to assisted living,  probably longer in the age of covid.  If covid is in the facility, visits aren’t the only thing cancelled.  There may not be the usual daily activities, and dining hall routines may not altered. So it may be taking him longer to meet other residents etc.

My parents are in their 80s and have been in assisted living a little over 2 years.  My mom is the one with diagnosed dementia ( technically mild cognitive decline) yet   totally understands the need for them to be there. My step-dad is not yet diagnosed, but probably has it too.  Unfortunately he’s one of those that can’t realize he has a problem.  Both have a lot of physical issues too.  They couldn’t function on their own, and their doctor told them so. But he refuses to believe it.

I know for a fact that I could not take care of them either in my home or theres. .  It’s all I can do to help them where they are and still try to have a life with my spouse, sons and grandchild.  Even with them in assisted living, they take a lot of time.  I handle their finances, attend their medical appointments, ER visits, etc.   talk to mom daily or every other day. During covid lockdowns I was their link to the outside world, and delivered groceries and sundries to them weekly. 

I had a car accident several weeks ago, so haven’t been able to visit.  But because they are in assisted living, I know they are safe and cared for in my absence, 

Arrowhead

DO NOT FEEL GUILTY. If you don't take care of yourself then it could damage your own health. Do the best you can and realize that there may not be a perfect solution.

Unknown By Man

I really cannot offer any advice, expect speak from my own perspective as to what I am going through with my mother. I have made the choice to do what I can to keep my mom in her home even knowing all the possible complications that will pop up. I dealt with the guilt that normally comes when you are forced to place a loved one and it ate at me. 

In truth I have found you have to make the choice that you can personally live with. At times the choice you can live with may not be the best choice for you on a personal level but nevertheless, you have to way the options against your own standards and feelings. The reality is everyone is different, and you are the only one that knows if you will be able to live with the guilt or not. Despite, everyone in my life telling me what I am doing is a horrible idea, I know for my own sanity I have to at least try and exhaust every option that is within my power to do what I would feel would provide the most overall good for my mother. 

I have found that I am not so much doing it for her, she inherently does not deserve such kindness and considerations but I am doing it for myself because when she is gone, I have to life what the choice I had made, and my goal to try and live a life with as few regrets as possible. When it comes to guilt we can be told to not feel guilty, that we did not cause the issues, that we are not doing it to the person but for the person. Which is all 100% true, but even still sometimes only you personally know what levels of guilt are you willing to live with. 

I hope you find an answer that sits well with you.

Stuck in the middle

I placed my mother in 2012 and feel no guilt about it.  She was cared for much better there than she would have been at my house or hers, even if I had retired to care for her.  Her new home was a mile from my office, so it was easy to visit frequently and continue the close relationship we had long enjoyed.  She passed away in 2018 at the age of 96.

I have made some mistakes and committed some sins, but placing my mother where she could receive the care she needed is not one of them.

Stuck in the middle

How do you live with the guilt?  You do it by recognizing the guilt as the irrational emotion it is.  You did not cause this problem, you cannot fix this problem, you are "doing my best" to help your LO deal with it.  No guilt to be had, unless you caused their brain damage with a baseball bat.  If you did that, then go ahead and feel guilty.  

Sometimes people don't like it when you do things for them that they need.  I told some Boy Scouts they were not going to climb a frozen waterfall in tennis shoes and bare hands, and they didn't like it, but I didn't have to meet their parents at hospital to explain why I had permitted such a thing.  No guilt.

Tfreedz

Hello TMB and welcome. 

I struggle with guilt daily but Stuck in the middle had some great points and good advice. I have written lists to help me deal with my emotions. Pro/con list of LO living at home, living in ALF, and living with me. I’ve had to look back at this list MANY times to keep my resolve strong that by placing my LO I am doing the best thing. Another post (Dad is gone) was extremely helpful to me as well. The writer stated looking back he regretted keeping his Dad at his Dad’s home for a yr because he lost out time with his own family and vacations because he was always at the home caring for his father who was unhappy anyway.

Unknown stated he is going to try his LO at her home and I wish him the absolute best. I know if my mom is at home like she wants to be, she will be against caregivers coming in, she will still feel isolated, and she won’t understand why anyone needs to interfere in her life. Also due to her extreme short term memory loss, she would be incredibly vulnerable. I’ve also been told that due to the pandemic caregivers are far and few between and even if you do get a group there will most likely be call ins and no backups. 

Try not to be so hard on yourself because as your name implies...you are trying your best!

Unknown By Man

As Treedz mentioned everyone has their own bouts with guilt, and different circumstances. All you can do is try what you feel is best and live with the choice that you have made. Often no solution is perfect, and as a person all you can do is what you feel is the best choice for your circumstance. 

It most likely will not be perfect, and you may still have some form of guilt towards your actions but that is life. I really do hope you find a solution that you can live with. As Treedz mentioned I made the choice to try and keep my mom in her home, because that was the only choice I could see myself living with. I just could not see myself be able to live with myself without even trying. 

linuxhitman

I get how hard it is. I watch my wife die a little bit each day. I've watched her change from a loving companion, caring friend, and mother to petty, mean, and spiteful.

She now suffers delusions that people are stealing her toothpaste and hiding her glasses. For weeks she hallucinated a man with a gun holding her hostage and demanding money (She even called 911 and told the cops that tale). She has threatened our daughter with physical violence. She accuses me of wanting her dead.

I could go on but a litany of troubles is not what's important here.  So, unless you have some neurotic need to feel guilty all the time, stop beating yourself up. You did not do this to him nor did he do it to himself. Do not accept responsibility for what you cannot control. Try to understand that you control the boat but you do not control the ocean.

Phoenix1966

I’ve seen more than one member on these helpful forums remind us that it is not guilt, but grief we are actually feeling for all that’s been lost/stolen by this disease. 

I’ve come to believe that and that helps me deal when the emotions threaten to overwhelm me. 

Iris L.

I submit that the feeling is not guilt but sorrow.  Guilt is for something you did wrong.  Providing the best care for your LO, especially in this Covid-time, is a loving thing to do.

Iris L.

King Boo

Iris is 100% correct.

This disease is difficult.  It sometimes brings impossible situations and care needs.

When we place both the responsibility for the disease, and disease outcome and care needs 100% on our shoulders, it morphs inaccurately into guilt.

When 24/7 care becomes needed, many cannot meet those needs without a large care team in place.  The situation of an adult child managing that care team itself is a full time job.  The hands on care requires an additional 3 persons for 24/7 care, plus a respite team.

It is likely that your parent is further along in the disease with the need for 24/7 care.

What you report in AL is extremely common, there is an adjustment period.

This is where you recognize your job is to sooth and comfort, not rationalize and make right through discussions with your loved one who can no longer process, understand or retain the information.

"it's ok, we just need you to get stronger!'

"your doctor says this is a great place, with great service, you deserve this to get healthy!"

'I don't know, let's enjoy what we are doing now.  Want to go get a snack downstairs?"

The other thing to keep a very close eye on is if she is at the correct level of care.  If it is a high acuity AL with lots of dementia residents you may be OK; if it is only a supportive or hospitality mode with activities, meals and minor medication support, it does not meet the needs of a person with dementia.  The fine art of re-direction, soothing and medical care with dementia is a whole specialty area unto itself.   some do fine in early stages in AL but be sure you have the next game plan for MC lined up.

2 Mantras for you when the going gets rough:

1.  Care needs drive the decision making (not my regret, my sorrow, my upset, what she says)

2.  The best answer is the one that brings the most comfot.

Practice your answers ahead of time.  "Soon, not today, they're not here now"
 

DrinaJGB

After nearly a dozen years of being sole caregiver to my DH who at first had a brain injury and now is diagnosed with mixed dementia, I have learned one thing overall-

That the expectations and assumptions of others cause us the most heartache.

Tfreedz

King Boo, thank you for your very helpful post. I had to screen shot it so I can reread it when I need it!

King Boo

Wow.  That really gave me a lift tonight.  Thank you for taking the time to say that!

FreakingOut

I think almost all of us feel guilty.  I hate to be a "debbie downer" but just wait until the doctors ask you if want a DNR every time she's in the hospital.  They all but beg you to please list them as "DNR", it's a little freaky.

My Mom reacted the same way when she got sent to the nursing home.  I've read tons of posts on this site where the poster's LO reacted the same way.  You have to realize they are speaking from an irrational point of view.  At the state they're in now, they can't reason.  If they were healthy and looking at the situation from that vantage, they would probably have a totally different perspective.

I don't think it's humanly possible for any ONE person to be that kind of caretaker 24/7.  Please be more forgiving of yourself.

FreakingOut

@neverends:  I can't tell you how much I appreciate your post.  It was so nice to get the perspective from someone who did this as a career.  GOD bless you, and thanks again for this post and prayers for you !!  I really hope you are able to get some help and a break!!  Do you have a visiting angels where you live?  Even a few hours a week I would think would be helpful.