Hi there and thanks for reading. Is it possible that it is better to live somewhat unappily, but guilt free, than vice versa. My mom is in a frail care facility, but I live in perpetual guilt and pity as she is sad and lonely, but when she lived with me, I felt I couldn't cope. My mom is 91 with vascular dementia. The doctors say she has moderate dementia. She is frail, but in relative good health. With help, she can totter around or use a walker, and feed herself, but needs help dressing and washing. She loops all the time and can't verbalize much; exhibits all the "common" dementia traits, from hallucinations to paranoia to incontinence. I'm 60. I don't have the financial means for a carer or a Home, and I'm divorced with no children, and have no siblings. She was living with me for three years. I work from home, but it is a full-time job and my hours declined to half as her needs increased. Then, and now, she is actually quite placid, undemanding, co-operative and pleasant, if she gets her way. But, she was, and amazingly still is, a controller, and resisted the routines I (tried to) put in place. To be fair, it was not so much that she was a burden, but that I couldn't then maintain my personal discipline with work and slept badly, listening out for her, sometimes a few days without sleep when she was having "episodes". I got grumpy, and shamefully, resentful and lost all confidence in my ability to manage anything. The family stepped in and got her into a frail care facility. She hates it as there is a routine and she hates being told what to do. Worse, the residents sit in a lounge during the day so she can't lie on her bed all day and talk to her imaginary friends. (She was a housewife and never worked or had hobbies or interests except church. And my dad was a sales rep and seldom home, sometimes for months.) She hates exercise, games and activities. She's not interested in TV or reading. The worst of it is that she makes little sense, so she can't communicate and make friends So, she is very lonely and confused why she is there when she should be with me. She cannot understand any explanation. The phone calls now (I phone her daily as she can't dial a number) telling me how she misses me and loves me and can't live without me and I am her daughter and have an extra room and the Bible says families must be together and she might die and then I'll be sorry ... are driving me crazy. And I get it - she shouldn't have to live as she is, alone and lonely and confused. I don't know how I will manage again if she comes back, but I guess one foot in front of the other; maybe she will get so frail it will become easier because she won't be able to keep trying to do what she wants. So, I wonder if in the long run the frustration and irritation (and debt) would actually be better than the guilt. For me, it still comes down to maybe it is better she is happy now as I can start again when she is dead and at least I will have fewer regrets. In short, we can't both be happy. Why should I be the one, especially as the conundrum is I won't be knowing she is unhappy, whereas if she is happy, she won't really understand that I'm not. I know the majority of advice will be don't do it, but I wonder has anyone taken that plunge and how did it go?
You gave caring for her in your home a shot and it was quite literally killing you physically, mentally and spiritually.
Your mom has had her life and now you deserve to have yours. Your mom is where she now needs to be and will only continue to get worse sadly as death is the only outcome of someone with dementia.
And please don't be spending even one penny on your moms care as you will need that some day for your own care. If money is and issue then you'll have to apply for Medicaid for your mom and if need be get her placed in a Medicaid facility if the facility she's in now doesn't take Medicaid.
And you have nothing to feel guilty about as guilt is for those that have done something wrong and all you've done is love your mom and are making sure that she's receiving the care she now needs.
Please replace the guilt word with the proper word of grief as you are grieving the loss of your mom, and who she once was. And that is understandable.
God bless you as you travel this final journey with your mom.
By the way by laying this "guilt trip" on you she is still controlling you.
You mention you are divorced with no kids and no siblings. But you say family stepped in and got her into the facility. What family? If other members of the family did not think they could care for her, if you were burned out then I can not imagine it would be easier since with dementia there is constant decline so she would need more help now then she did when she was living with you.
If you are still working can you manage with your hours cut in half or more than half as her needs increase?
You have done the right thing. Taking care of someone does not mean that you personally have to care for them. It means that you make sure that they are safe, they get the care they need.
If you feel that you have to bring mom home before you do look at any and all resources that might be able to provide help.
Was her husband a Veteran? If so she may qualify for Aid and Attendance.
Are there programs through the Senior Center in your area that may have grants that might help with caregivers.
Contact Area Agency on Aging and see if there are programs that might help
Is there a Senior Volunteer Agency that might help with caregiving on occasion.
Is it possible that mom would qualify for Hospice? If so you would have a Nurse weekly, a CNA 2 to 3 times a week to give mom a bath or shower. You could request a Volunteer that could sit with mom for 3 to 4 hours on occasion.
All medical and personal supplies would be ordered and delivered. And Medicare/Medicaid would cover Respite on occasion.
If mom does not qualify for Hospice there is a fairly new program with Medicare that may provide some help and support it is called GUIDE please research this. It can cover about $2500 per year in Respite support as well as other benefits.
Bringing mom home is a big decision and it is not going to be easy and if you find you can not manage returning her to the facility may not be easy. .
You're right, unfortunately. I have to look at the bottom line now, the $s.
And, yes, returning her would be difficult, if it came to that. For me, for her and for the family. I must be more practical and stop thinking with my heart. Thank you.
She was placed in a LTC facility. I felt bad that she lingered too long with no quality of life and had to be placed there. Kept hoping she’d just die in her sleep in her home but I know now that scenario seldom happens.
We placed her so that she could spend her last days with my father who was already there for over a year. She died at the 9 months later.
i have no guilt that my sisters and I placed her there. . I know I did the best I could and have no regrets.
It isn't appropriate to your situation.
You didn't cause this, and guilt requires causation. Change out the g-word to the more appropriate "grief". Your mother is grieving and so are you as you stand witness to the losses neither of you can do anything about.
As well as not causing this, it is important to understand you aren't omnipotent or in any other way god-like, so you can't fix it. And attempting to manage the unmanageable will end you up with little thanks for anyone. The man who is drowning may take down the rescuer with him.
It is very important also to know that, while your mother is "sad and lonely", and you can grieve that, you cannot change it, and you have already acknowledged the truth, that her living with you is not sustainable, not manageable, and doesn't work for EITHER OF YOU. Should you take her in you would quickly learn this all over again, and meanwhile will have done both SELF-HARM and harm to your mother by giving her hope and then smashing it when you go under.
I would get some psychological counseling with a good cognitive therapist. Until you do that you will not be able to let go of these WRONG things you keep telling yourself.
I would hope you know, can find the serenity prayer and can practice it.
This isn't something you can FIX and you aren't responsible for the happiness of anyone else including your mother.
She may, in fact, not be happy again. Old age isn't, I have found personally (at 83) a time of delight and happiness other than brief moments. It is more about learning acceptance. And acceptance is the textbook before your poor mom right now.
As my brother said when he himself was in care "I don't much like it hon, but it's much like the army when I was young. While I don't LIKE it I have to ACCEPT it and make the BEST of it." And he DID. That was his choice, as your mother's choices are now set before her on her own plate.
Recognize your limitations. Embrace them. Live the one life you are given.
Mom will get used to where she is as her Dementia progresses. Guilt is self imposed. You did not make Mom old, time did. You did not give her dementia. She is safe and cared for. Visit and just be her daughter. When she says she wants to come home tell her its not possible right now because you work and need to work. My daughter never told my Mom that she was going home after she visited her. She told her she was leaving to go to work.
Talk to the DON about Mom not being left in the common area all day since she does not enjoy it. Could she not go back to her room to lie down and talk to her imaginary friends for a few hours a day.
30+% of caregivers die before the people they are giving care to die. You need to work to put into your retirement and also to have extra money for your rainy days and your golden years.
You didn’t make her old. You can’t fix her and you aren’t responsible for making her happy.
A happy person is happy wherever they live. A miserable person is miserable wherever they live. Many of us like to delude ourselves otherwise, and live with guilt as a result, thinking we have The Power to make other people happy, especially ones with dementia.
Check out the website Outofthefog.website to learn about FOG, Fear Obligation and Guilt, and how to get rid of it and live a good life.
She had no hobbies or interests before her dementia, and now she rejects tv, books, and all activities at home care home. Again, she is choosing to be unhappy, and guilt-tripping you for her lifetime choice. Just let her be, where she is, and reduce your phone calls with her, as they just trigger her complaining mindset.
It's also possible that she is content or even happy in the home, but throws on the theatrics when she's talking with you. This happens often.
Please move forward with creating a happy life for yourself. You are a worthy person and deserve it.
I remember my very first boyfriend in my late teens and he cheated on me (lol, oh I wish those days of first love back, warts and all!). And a friend said to me, "You're not the only one you know." I was miffed at the time, thinking she was telling me to stop feeling sorry for myself. But, later I realized that what she meant was I was not alone. And today, when I read these comments, I find great comfort, knowing I am not alone.
Thank you!
Also, if she starts giving you guilt during a call, shut it down. Tell her you aren't going to call her if she is going to keep asking to move back. It isn't possible. If she continues with the guild, end the call: I'm not going to talk about this, mom. I'll call you on Tuesday. Bye. Rinse and repeat. It can work.
Her housing association put in a stairlift that helped her get up and down stairs but we still tried to get her to move to a bungalow for her own safety and she refused, angrily asserting that she would stay in her house til she died. Well...that's sort of what happened. She got up confused one night and fell down the stairs. She suffered the kind of injuries someone would usually get in a car crash (broken femur, 7 broken ribs, broken collarbone,12 inch gash in her head) and eventually died after 3 weeks in intensive care (ICU).
There is absolutely no way you can protect someone this frail. Where she is now is the ONLY safe place for her. She won't understand that but maybe knowing that will make it easier to insulate yourself from the guilt?
You can find just about anything you want in the Bible. It's probably the most misinterpreted and over-interpreted bunch of writing ever. Ignore mom and find your own verses to back up what you think and feel. Start here: “God is within her, she will not fall; God will help her at break of day.” (Psalm 46:5) That's about you.
Stop talking to mom so often. She may be sick and lonely, but don't give her the right to bring you down. As for families supposed to be together, assure her that you're with her in spirit all the time. You know, like Jesus is, which you can assure her he is time and again. Don't let her guilt you! That's about the worst thing you can do to a child, and you might point that out to her. She'll sob sob sob, and then you hang up. Have some chocolate nearby for when that happens.
I wish peace and Hershey's Kisses for you ASAP.