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Does the guilt and sadness ever go away when you have chosen a nursing home for your mother? A very sweet mother, with mild cognitive issues and possible Lewy Body, very stubborn. Also, I am a 66 year old disabled (polio survivor), married and would like to travel with my husband before I am no longer able. Almost every time I visit her, we end up arguing (I try not to!) and I leave, then she calls and apologizes and I feel even more guilty. She has had 4 hospitalizations in the past few years, TIA strokes, anxiety and depression. Her never happy and very negative outlook is getting me down. She always thought she would live with me and she reminds me of this as well as always talking about her home and her things. I know it is hard but she has been in SNF for almost 2 years and it is not any easier.

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You have nothing on your profile. Does Mom have Dementia? I would think the strokes have done some damage. If she does, you will not be able to reason with her. Walking away and leaving is the best u can do. She may never learn though. I was 65 when I took in Mom. Like you, I was hoping I would have her in an AL sooner than later. My DH was 68. I was so afraid something would happen to one of us where we couldn't enjoy our retirement. So I see where ur coming from. Went she asks about living with you tell her she needs more care than you can physically give her.
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Wearygirl Dec 2018
Yes, she has been diagnosed with dementia but sometimes I wonder. The staff and several roommates keep reminding me of how sharp her mind is...I have now completed my profile. I do worry about enjoying retirement and I have to remember that we are on the backside of life and need to enjoy our lives. Thanks for your response.
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I wish I could say it gets easier. My Dad thought I would take care of him which I did for years but when he began falling, refusing to go to the doctors, refusing to take medications, refusing to allow help come into the house, etc, he eventually ended up in the nursing facility. (All my fault) He has been "mad" for over 2 years now but he does participate in activities and overall, and he is doing o.k. I believe when he sees me, I remind him of how his life was years ago and he wants that life back. I go to talk to the staff and make sure he has everything he needs or wants. It may help to focus on the positive things of staying where she is (i.e. not having to take care of a home, cooking)
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Wearygirl Dec 2018
Thanks for your response. I do have to remind myself that she is getting 3 meals a day (very picky eater; sometimes gets anorexic); she has assistance with showers and we no longer have to do everything she needs when she lived at home. She has had several falls, also. I have realized that I cannot do it all, though, so I am appreciative of the help she receives at the SNF - I just wish she wouldn't think it is "all my fault".
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Unfortunately it doesn't
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Wearygirl Dec 2018
Thank you for your response. I didn't think so since it has been 2 years and it seems to be getting more difficult!
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Hello Weary. In my case, no, the sadness and guilt remain. I know in my brain that continuing to care for my parent in my home would kill me, but in my heart, I want to. Dementia is a cruel disease to deal with because you continually are beaten down emotionally by a person who cannot help the behavior and doesn’t remember causing any problems. My father recently died after living in a facility for 6 months and my mom appears to be declining rapidly as well. The guilt & sadness coupled with the grieving are overwhelming. I think if the parents remained in my care, they might be doing better and my dad may have not died, but then I have to remind myself, I would have died trying to save them. It’s a no win situation and I’ve found there’s either guilt or sadness by putting your loved one in a facility or anger, and sadness if you move your loved one in with you. (I’m speaking about loved ones in the late moderate to early severe stages which are typically the folks who are in the facilities.) It takes a village to care for a person who needs 24/7 care who is mobile and who doesn’t understand what anything is, where anything is or how to use everyday items without hurting themselves. You have to keep telling yourself that at least your loved one is safe and fed and unfortunately that has to be good enough. Alzheimer’s and dementias aren’t like other diseases where you can explain and logically approach a game plan. You are constantly dealing with different personalities and behaviors all within the same person who is living in a reality all their own while you are trying to live in a different reality. My heart goes out to you and all others walking this path.
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Wearygirl Dec 2018
Thank you for your response. I know there are many others in the same situation. I wish there were some better solutions, like letting elderly people live in their own home with 24/7 care that would not be so expensive.
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Is her depression being treated?

It sounds as though your mom has a raft of mental health issues and knows how to push your buttons.

Your mother has been assessed as needing 24/7 care. You cannot provide that at home without her paying for a great deal of in home help.

Does she have the funds for 3 shifts of caregivers?

Contrary to what she seems to believe, providing for her old age was HER responsibility, not yiurs.
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Wearygirl Dec 2018
She has been assessed as needing 24/7 care and she does not have money for 3 shifts of caregivers. Divorced my Dad, so no VA help. I agree that it was her responsibility and believe me when I tell you that I tried for years to get her to address the inevitable issues that would come with old age. She had a plan and that was to live with me so she could just spend all of her money on what she wanted. Thank you for your response!
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I am not understanding the sweetness by your post. She sounds very difficult. I had a grandmother in a nursing home. Her mind was intact but her mobility was failing. I was very close to her growing up. It was heartbreaking for me to see her there. She had spent years with my aunt and uncle until the mobility issue arose. There was nothing we could do but try to brighten a day with a visit. She did not deserve this as she was a wonderful person in so many ways. I don't know that I am answering you but I feel that with all you have said there is no alternative. Yes you will have sad times. However she has exhibited behaviors at times that don't deserve some of your emotions
Aging poorly is very depressing
All we can do is try our best to help them while also keeping ourself sane.
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Have you considered staying away for a while?

Maybe take a two week break; talk to the NH about having her meds assessed by a geriatric psychiatrist to see if there is any adjustment that can be made.

YOU have done nothing wrong by taking care of yourself and trying to live your own life.
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I don't have guilt and didn't when I placed my LO in AL, then MC. I cried tears of joy because I knew that she was getting the care she needed.

I might start by discussing her depression with her doctor. I'd explore medication. Dementia often causes depression, anxiety and agitation. Meds helped my LO a great deal, but, until she got on the meds, I did not argue with her or try to correct what she said. I agreed and then changed the subject, always trying to stay positive. It helps to keep in mind that the person has cognitive issues and you can't convince them you are right.

I might read a lot of Lewy Bodies and dementia in general, which you say she has, and be able to recognize it's the disease talking and not her. If you make up your mind that you are not going to get upset or bothered, it helps to stay calm. I might applaud yourself for placing her somewhere she is cared for and have peace with it.

I couldn't tell from the various posts and your question if she is in AL, MC or nursing home. You might explore if she is getting the right level of care. Things may improve if that is remedied.
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My husband at age 76 was moved to a SNC due to the effects dementia has had on his body. I miss him and wish he could be at home with me, but hospice and his Dr. made me see that I could not take care of him any longer. I am slowly learning to become a wife again. He loves holding my hand and even likes to give me kisses, The time we have together has been precious to me. I can even laugh at him when he tells me to leave. It is so nice not having to be a caregiver.
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She is punishing you for doing your best . The demands of love can be very toxic, especially when parents hold over our heads, how much they sacrificed to raise us.
My answer to that is i didn't ask to be born. She did not ask to be old and crippled.
No one is at fault here.
You must do right by you. I would write her and call her , as often as i could stomach, and visit once per month.
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I work in an snf and know someday my mom may be a resident- I’m at peace knowing that because I know she will be safe and that is my number 1 concern. I see the adjustment process with others and it really does wind up being a positive vs a negative for most🙏Hope this brings you some comfort
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When my Husband was diagnosed with Alzheimer's I said ..."I will keep him at home as long as it is safe for him and safe for me"
Fortunately he was easy going and very compliant so I was met with no resistance.
But if I were not as healthy as I am, if he were not compliant, if I had not had the help of Hospice and the VA I would have had problems and it would not have been safe for either of us.
So....
Your Mom is safe where she is.
You have your own health concerns and you need to remain safe...(What would have happened if you were injured helping mom off the toilet?)
YOU are the one that is projecting the guilt. Tell yourself that you have made the choices you made for her health and safety, not because you want to travel, kick back and let someone else care for mom.
You can visit and be a daughter NOT a caregiver, you can be a better advocate for her.
And I will bet if you had talked to her about this very thing 20 years ago she would have told you that she would not want to be "a burden".
Sleep well tonight...you have nothing to feel guilty about you have made the right choices for you and her.
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You must let go of the guilt lest it eats you up. You're an unwell person yourself-"polio survivor" so it is IMPERATIVE that you take care of yourself. Your mother should and CANNOT continue to control your mind.
Apparently my own late mother deemed me so mean that she called me "Hitler."
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"She always thought she would live with me." Did she just assume that she would move in on your life, or was there an actual agreement between you and your husband and her?

I ask because I know that my dad thought he would live with me and my husband but he forgot to get our agreement. When he got upset I had to bite the bullet and explain that no one can just move into someone else's home with out everyone being in agreement.

If your mom is "there" enough to have a reasonable conversation with, it is time to stand up for yourself and lovingly explain that you are going travelling with your hubby, you will call and send postcards but you will not be chewed on when you visit. She needs to accept that she is at her home now and making you feel bad will never change that. It will however change you coming to visit. If she gets ugly, sorry mom, I'm not doing this and leave. Don't take her calls right away, let her have time to really think about the situation. You will have to do this every time until her behavior improves. Your absence will eventually get through to her. Right now she gets to chew on you and make you feel bad, then she gets to call and apologize and make you feel bad again. Take that power away from her.

Guilt implies that you have done something wrong. Giving her the gift of a safe environment with good care is not wrong. Just because she bore you does not mean she is entitled to your entire life for her benefit. This belief is selfish and unreasonable, that our parents have it, is mind boggling.

Go enjoy your adventures and send her little packages with regional food and goodies with cute cards that say how much you love her.
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Morass Dec 2018
One more thing. I tried EVERYTHING...caring for her myself, assisted living, her own little apt. with me helping...you name it. When I found her 8 weeks ago on the floor with another broken bone thinking she was just sleeping, that was it. Naturally, another surgery, another stint in skilled and she simply cannot come home. It is the loving and right thing, in my opinion.
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I'm sorry. I know how you feel. My mom is in the Dr. Jekyl/Mr. Hyde phase for the past 3-5 years. Yesterday, she was sweet. I'm 55, have had 2 heart attacks and have a rare genetic disease as well. Everything I worked for is gone. But, when you see them so frail and lost, it's heart breaking. I also have a seriously mentally I'll adult sibling who mom did everything for; so mom's falls, dementia, etc. has spiraled her. It is what it is, and I hate it since, basically, neither is really here...just their bodies...with me trying to keep it together. I try to practice many of the tips I read here and wish you the best.
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I so know where you’re coming from. It is so cm,n for the parent to say it’s all our fault. Been there and have the t shirt. Just knowing you aren’t alone in that regard should help. So very common!! Go and enjoy your life and realize that she’s had her life and she is just wanting to make you feel beholden. She’s in a safe place and guess what...you CAN'T fix her..and never will. She’s in charge of her emotions not you. Tell yourself that over and over until you believe it and it will make it easier. Once I realized I can’t make my dad happy (as much as I wish I could), it became easier to have a life. Once I realized he had a pretty damn good life up until he was 96 and he fell and broke his femur and that when he was my age he was out dancing, traveling and having a ball, I no longer felt responsible for his happiness. It’s a lie we "fixers" tell ourselves. So my advice...go have a life before you keel over. And if you do, guess what...mom will manage without you. Go for it sister!
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I know exactly what you're saying... My Mom was diagnosed with dementia after a severe broken hip/wrist fall, surgery, abuse/damage in a "rehab" center, several years of wound care, percocet every 4 hours, etc. etc. She was in pain, depressed, confused, drugged up, post-anasthesia fog, and yes - 95 years old - but "experts" were so quick to diagnose her as demented... When she ended up in a NH due to physical damage I couldn't handle at home by myself, her mental health (attitude, memory, depression, isolation) did decline. She pretty much just withdrew and gave up, but just like with yours, aids and other residents marveled at how bright she was. She sure seemed mostly "there" when I visited or took her out for the day! It's so hard and I did promise her she'd never go to a nursing home - but in the end I had no other option and neither of us had the life we should. (Had I felt she was truly safe and cared for, it would probably have been different for both of us, but that just wasn't the case - and I don't believe it really is in most cases of NH care). In the end a CNA in the "safe" NH (apparently) didn't follow safety routines and Mom fell while being transferred from her wheelchair to a shower chair and broke her tibula and fibia below her left knee. That was the end, and she died 10 days later... Our system is pretty flawed...

Many of the posts here seem to blame the person stuck in a horrible situation for their anger or depression... For 2 1/2 years, I took care of Mom, visited her every day, took her to all her doc's appts., therapy, battled for her care in the NH (even to just providing the means of brushing her teeth (at 96 she had all of her own because she was scrupulous about dental care!) If she lashed out at times, she had every reason to be angry and frustrated with her "life", and I was the only person she could vent on... I understood, although it was painful at times. I wished for a different life - for both of us - but never felt guilty or at fault, or resented her When friends said she was "safe" and I should enjoy my own life, I countered with the FACTS that she was my Mom, best friend, and - literally after we'd lived together for 20 years - my life partner... Had she been a spouse, I would have been expected to care for her... The hard thing for me was not guilt or anger - it was grief and helplessness at what had become of her and her life (and yes, of mine)...
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poetry21 Dec 2018
The hard thing for me was not guilt or anger - it was grief and helplessness at what had become of her and her life (and yes, of mine)...

How true, the same is happening to me now, because yes, I did take care of her for 13 years, but my life and the life of my family was so altered by that care, that I am definitely know that it would be completely different if not her present. Last two years her being in my house I was even scared to have a friends as it was impossible to have a normal conversation, she interrupted and tried to be the person of conversation even if she could not understand what we were speaking about. Lite corrections and asking Mom let me be with my friends, and she was angry and furious with me....Now, when she is in NH, our life is not much better, as every time I am there, I came home crying of inability to change anything, understanding that her life is miserable and I cant do anything of it. If I have millions of money, I will buy a house with two different apartments, hire for her great caregivers so on so on.....but I dont, I am in my 50 th, first line emigrant in the USA and struggling to bring kids to life and education. 13 years she lived with me, we did everything as one family, I showed her all the country as we love to travel, we never went anywhere without her (may be it was a mistake as she become completely dependent on me, but she was so depressed or showing this after my father death that I had no strength to tell her, Ok, now live alone in the country which language is not your native)....anyway, i still in guilt and depression although she does not remember that i visited her after 5 minutes of my leaving....antidepressants and drinking does not help....
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Here's a good one--- I know a 59 year old woman who lives in Section 8 housing. She is never happy. Thought "someone was out to get her, walking on her head at night." - He lived one floor above her and was using the bathroom in the middle of the night. Now she has a upper floor apartment and demands Section 8 move her to a bottom floor since she's gained weight and blood pressure elevated. Then she said to management company-"You have to control that highway traffic." Ummm not happening!
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Good evening, Wearygirl,
Both my parents share a room at a nursing home. Every time that I enter the facility, I ask God for His grace, mercy and power to go in with me because I often feel a sense of dread prior to my visits. Actually, I felt that way twenty years ago when they were still functioning and living in their own home.

I visit about every other day. It’s that long walk from the parking lot to the front door that seems to be so difficult. That is when I do the most praying. Once I enter, my anxiety and sadness abates and I’m on - greeting other residents and the staff, looking for my parents because they roam around the facility, and advocating for their care.

Most of the time we have an uneventful visit and I leave them contentedly listening to music or watching a DVD, or engaging in some activity with the other residents, but there are some days in which the fog of dementia clears in one or the other and they become very aware of where they are and what has happened to their life. Those times are tough.

For example, recently my mother said, “I never dreamed that I would end up in a nursing home”, and another time “I miss my house” (that was sold to pay for their care). That was hard to hear. It’s weird, these moments of clarity and understanding. It’s as if we have gone back to a time in which their mind and bodies were still capable. As if they had been asleep and awoke to find themselves in this predicament. It doesn’t last very long, and they seem to lapse back into a confused state or they get distracted by other things.

I have learned to acknowledge their feelings. It is amazing how much that seems to work. Yes, it does suck that their old age was accompanied by poor health, poor mobility, and dementia when a friend’s mother lived alone, drove her car, and took care of herself until she was diagnosed with cancer and died two weeks later at the age of 95.

Yes, it takes the sting out of it to acknowledge that life is unfair, but I don’t leave it at that. Before I leave, we say our gratitude lists, and they still have a lot to be grateful for; it just has to be acknowledged also.

The sadness does not go away, and the guilt? My siblings and I took care of our parents for over 15 years, well past the time they had already qualified for a nursing home. We and professional caregivers became the nursing home. We did this until we couldn’t anymore. I now recognize guilt as regret. Regret that they did not have a healthy, vibrant old age. I had no control over that, but with God’s grace I can bring some comfort and care to them.
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I dont think so. My mom is in NH after being living with me for 13 years. her dementia problems started 3 years ago and altogether with her esophagus problems and inability to eat solid food its lead to hospital stay and feeding tube. Slowly her ability to eat puree food return but she still does not understand that she cant eat solid food and if I take her home now, she ll start eating everything she wants (she is 90 but not bedridden) and in two days it will be same aspiration pneumonia. She in addition to her dementia is not native english speaker, so I am hiring woman to be with her some time in NH to go for a walks etc...She after hospital does not remember my house but still every time I am visiting and I am visiting almost every other day, I am crying on a parking lot of guilt and inability to take her home. I have two kids and my health is not good (was in cancer treatments year ago), so I logically understand that she is in a best place for her now, but its absolutely hard after 13 years having her in a house to accept this. I was sure she ll die at home, but now I dont know what is a home for her....She as your mom always thought she ll live all her life with me. The problems with her were always that she does not listen to my words, for example about what she can or what she can not eat, and now in dementia and totally lost short memory state its even worse, so I am lost and guilty and in depression and in drinking....It's not getting better. I almost repeated your post, sorry. I wish we can cry on each other shoulders.
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ImageIMP Dec 2018
poetry21 (you too, Wearygirl) - I feel so much for you! I know EXACTLY how you feel, because my Mom lived with me for 20 years until she fell and broke her hip & wrist (she was 95). Briefly, she had orthopedic surgical repair, did great, but the first rehab/"skilled nursing" facility she went to from the hospital was neglectful and abusive and the medical damage they caused to her feet kept her from ever getting back home. After 2 years of Hell, she was having memory problems (she'd had 3 major surgeries, woundcare/dressing changes to her feet every other day, been on pain meds, moved 8 times to different facilities in 2 years...), she was in a wheelchair, blind from macular degeneration, needed complete help, and I had to place her in a long-term nursing home... It broke my heart! She was so unhappy, didn't understand why she couldn't come home (I am alone, no kids or siblings, 69 yrs. old, health problems) and now she was confused and having memory issues. I can relate totally to your feelings of guilt, depression, heartbreak! I didn't resort to drinking, but did EAT LOTS of food! (I gained 40 pounds, and let my house, yard, and myself totally go out of control...) As you did, I always thought she'd be with me forever and never go into a nursing home... I visited her almost every day, took her to all doc's appointments and other appointments, and fought for her to get good care in the nursing home. I don't know what to tell you except I know - and you know in your heart - that you have no choice but to have her live away from you. Please know - you need to know! - that you can only do your best, and that has to be enough! My Mom died a year ago last month (Nov. 13) and I'm now trying to "re-invent" myself to have a life without her. I've lost weight, and am trying to meet new people and take care of things. It's hard! I miss her every day! But - gradually things are getting better and I've finally been able to accept that there was just nothing else either of us could have done differently. I know that now Mom is at peace and not frustrated, depressed, in pain, and not living the life she wanted... If you were close, I'd be happy to let you cry on MY shoulder, because I know what you're going through... Please try to be kinder to yourself, and take care of yourself! If possible, sometimes a counselor can help, even just to give you someplace to vent! (Friends get tired of your problems, your exhaustion, anger, and depression after a while!) You really can get through this...
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