Everything I am and everything I have is disappearing into that black hole. My happy life with my family: my husband and my three children; all my hopes and dreams; and everything that I was: empathetic, compassionate, and patient, is being sucked in, never to be seen again. I tried so hard to do the right thing by her... and all I feel now is resentment welling up inside me like bile coming up the back of my throat.
I don't want to put her in a home. I know that that will be the end of her. But if I keep her here with me it will be the end of me. I can't pretend to be the strong resilient one anymore. It's starting to take a toll on my relationship with my husband and my children and, I never thought that that would be me. It's only been a year since she moved in and I'm at the end of my rope already.
I'm posting this because I just want people to know that if you feel this way too you're not alone.
If your parent is fragile and very ill when they enter a nursing home, that might be the case.
But, if your parent simply needs more care than can be given at home, if they are becoming querulous and anxious when alone, going into a facility with the right level of care can mean a new lease on life for them.
My mother went to an Independent Living Facility at age 88. She had mild cognitive impairment, unstable blood pressure and frequent panic attacks. IL gave her the best quality of life that she'd had since my dad passed away. She participated in ALL the religious services, developed an interest in the stock market through the "investment club" at the home and got marvelous, attentive medical and psychiatric care from the on-site doctors.
She had a stroke shortly after her 90th birthday and broke her hip a few months later. She survived the surgery (which we were shocked at) and we moved her to a nursing home.
I figured "this is the end". She lived contentedly at the NH for 4 1/2 years. Family visited often, we moved Thanksgiving and Christmas to a big room made available for family celebrations. She got to meet 2 new great-grandchildren. She had a decent quality of life there and neither of these moves was in any way "the end of her".
So, stop letting the idea of placement be a dead end and start researching.
What's that saying about being at the end of your rope? Tie a knot & hang on?
Please hang on.
What got me to finally accept that things had to change was realizing that my burnout had changed my relationship with my mother in a very negative way, I began to doubt every positive memory and became increasingly short tempered when caring for her. It broke my heart to put her in the nursing home but despite the drawbacks they were able to offer her better care than I could give at that point of her life, and lifting the crushing burden of responsibility from my shoulders allowed me to regain some tender feelings for her.
"I am caring for my mother Earlene, who is 72 years old, living in my home with alzheimer's / dementia, incontinence, and sleep disorder."
You've written that you regret moving her in. Do you think you have no other choice than to continue as things are now? Do the women in your family live into their 90's?
Are you aware that up to 40% of the caregivers of elders with alzheimer's/dementia die before the elders they are caregiving for?
Are you an only child? (If so, how did all of this get dumped on you?) What does your H say about all of this?
You can change this situation. Too many people think they could never put their parents in a facility. I read where you are documenting your mother's payment of expenses for possible eventual Medicaid qualification. That is good!
going to have a choice - - they had to go to a home. We did what they wanted for years, now it’s time to do what’s best. In my in-laws case a home really is what is best for them and level of care and oversight they need, but “best” also includes what is best for the caregiver and family life overall. Don’t feel guilty about home placement, especially when your heart and head are in the right place...don’t let feelings of guilt get the better of you. I didn’t think I had a light at the end of the tunnel, but then there was a turn of events and applied for Medicaid and they’re now placed “Medicaid pending” even though it could be nearly a year before they’re approved. We are slowly beginning to feel some weight lifted. Good luck to you.
Prior to Last year I was referring to my mother as the black hole of emotional need. Her needs were outweighing mine and everyone else in my life. Her anxiety was out of control and pressing relentlessly into our relationship with her constant demands and needs. She has dementia and a previously challenging personality to begin with. The decision to get professional help and place her in a facility that could better care for her made all the difference in the world for both of us. I hear everyday how she would prefer to be in her home, The visible change in her level of anxiety and the fact that she has social interactions now instead of isolating herself within home from the rest of the family ( Which created more resentment and danger for her physical self) is totally worth that price.
We could not afford to place her in a facility( Or so I thought) However after talking to the social workers and billing staff at several facilities and looking at her benefits and finally applying for my father's veterans benefits (that they had never applied for), we are able to make the monthly payments for her care.
I like you, felt like I was in such a rut that there was no way out and endured that for years. Please know there is a way out and you need to find it in order to find yourself again.
OTHER natural causes killed mom. She could have been a self-caring walking, thinking person she still would have died so it was NOT Alzheimer's that killed her. Ironic all those decades of combating Alzheimer's disease it was something else that cause mom to die. The feeding tube kept mom's body very healthy--and above all, comfortable. Dehydration can take 2 to 3 weeks and is very cruel even with narcotics. I spared her of that. I never regretted it. Every day I checked for residuals and I knew she was starting to die when she retained the tube feedings and only then I stopped it since her body was shutting down. So the feeding tube was very handy to have to gauge her body processes.
Mom is forever in my heart, and I thank God I gave mom a very comfortable, painfree life which was why she lived so long, despite her multitudes of chronic illnesses INCLUDING insulin-dependent diabetes. Despite the years of sacrifice I know I took care of her better than anybody else in the world, and I did my duty to her and respected my father's dying wish for me to take care of mom. So when she died I am at peace, NO regrets, NO guilt. Oh I had mom on hospice for two years. I basically used them for routine labs and her medicaitons which was lopresser and insulin (that was it), and a multivitamin. I revoked her hospice for the feeding tube, and put her back on hospice on discharge from the hospital. It was all good! She never had a problem with the feeding tube to the end. However, note the feeding tube requires a LOT of care in itself, and I mean a LOT. But mom never had a problem with it. It only took a few minutes for the surgeon to get it in her in the operating room--he said those are easy to put in... and she was only in the hospital for that reason. Never had any complications, and she never messed with it.
This business of being my own caregiver. That's hard. Life is very hard without mom. Time does NOT make it any easier, but I learned to adapt to the situation.
You need to take some time for yourself or your going to go crazy. If your feeling this way now, it’s just going to get worse. Your husband needs you and family needs you to be there for them. Please try to get respite care for your mom. So you can have time for yourself and your family.
I know it maybe kind of hard to have an aide come in Bc if covid but they can mask / glove up while in your home.
The aide can help your mom with all aspects of daily living. They can clean up her living area. Help with her laundry.If your mom is able they can also take her for a short walks.
This is just an idea. I know it’s extremely hard to take care of a parent. You can either look at this as a rewarding part of your life that you have the ability to be able to take care of her, or you can be bitter. Being bitter isn’t going to help your family or the situation your in. Please try to look at taking care of your mom as a pleasure. Remember she did this for you too. I know it’s hard and unbearable at times that’s why I think you should look into getting an aide to come in to give you a break. If you can get a breath of fresh air you may see things differently.
This is just a bit of advice from someone who has been there.
Take care of yourself.
LO, I will see that you get needed care. I will be providing some of it but not all. I will do what I can manage reasonably, and that is all
I can do. I will not be the only person serving your needs; there will be others too.
<Left unsaid: ADJUST!>
i put my Mom in an ALF, and honestly it was a relief to know that someone is always watching over her, and that I can take care of myself and loved ones.
her adjustment and responses in an ALF are up to her.
She can choose to be miserable in one, or she can choose to make new friends and participate in activities there.
placing her in an ALF will free you up to Just enjoy the times together with her, with no resentments.
it is hard to make decisions for our parents. Their care, as you know, involves far more than first realized.
be good to you, you deserve it!
even Wonderwoman needs a rest!
Fast forward to today and my wife is now her primary caregiver. We moved her closer to us so it would be better for all involved as she didn't get many visitors beyond my wife catering to her every whim. She too consumed a large majority of my wife's time. My wife's siblings never wanted to be involved in her care.
The last couple years she exhibited symptoms of Dementia and back in October 2019, she had a major mental episode and had to go to hospital for evaluation for 7-10 days. She always said she NEVER wanted to go to a home again. But the doctors deemed her unable to take care of herself and had to go to assisted living/memory care facility. The place she is in now is very comfortable and nice. And after a few weeks, she did call it home. Not ideal but pretty good considering...
Dementia is much worse now and she is a shell or husk of her former self but at least she is getting the care she needs despite COVID-19 eliminating the face-to-face communication she desperately wants and needs.
The moral is that you can only do so much. Even on a plane, they tell you in the event of an emergency to take care of YOUR oxygen mask/life preserver first before assisting others. You have to do what is best for you in order for you to continue to be there for others.
If you let this go on and lose your family, you’ll have no one to blame but yourself.
There is help out there for both of you.
Now...let's get our heads screwed on right.
1. A home will most certainly NOT be the end of her. I thought the same thing. I was told by someone wonderful at the Council on Aging that my mom would adjust. She did. Visit some places. Talk to the staff. Ask their advice and ask for help with the transition. You'll be pleasantly surprised.
2. No, none of us are alone in this situation--but then we are alone in the house with them. So, GET OUT! Walk, run, bike, job, Get buff! Caregivers need to be strong. It sounds like such a cliche but start anew hobby. Read. Sew. Knit. Embroider.
3. Remember this--caring for the aged is LONG and SLOW. It goes on and on. My mom has been in a home for about eight years but I have been caring for my husband for ten also. He is still home and I am the cook, shopper, medicine woman, manager of Everything. I loathe support stockings. You have to change something in your situation to make it bearable, even enjoyable if you can. This is the long haul, believe me.
Keep in touch. Good luck!
Take care.
You might surprise yourself if you put mom in assisted living- she would make friends, have others to relate to, activities. And you could find your way back to happiness. It could be the best thing you could do for her and your family!