My mom is in a nursing home in Colorado near my brother, and I live in California. She is 79 years old and has been recently been diagonosed with dementia. She refuses to engage in any activities at the home mainly due to her lack of hearing and is often nasty to the staff trying to help her. She is coherent most of the time. Our only method of communication is text messaging because she can't hear or write any longer. When she texts me she usually asks for me to let her die because of how much she hates it there and accuses me of not loving her. She lived with me for 10 years after a non-traumatic brain injury but I had to take her to a home because I could no longer provide the care she needs. The home is in Colorado near where my brother lives. He with his wife and teenage daughters and I visit as often as possible but with COVID restrictions we haven't been able to take her out as often as we'd like. I want to cry every night because I want to improve her quality of life but I don't know how. I'm looking for suggestions. Thank you.
Realize what you can and cannot realistically do.
I sense you are going through a grieving process - letting go. We (I am in a similar situation with a friend) want to do more than what we are doing or able to do.
It hurts; it is sad; it is frustrating when we want to support someone we love and we cannot due to circumstances: physical distance, a pandemic, and dementia.
Perhaps all you can do is listen to her text messages. AND respond with kindness and do not directly respond/answer her questions-comments (as you pose here).
If she will understand, tell her that you are praying for her; bring God into the picture if she relates. Respond with icons of hearts or whatever she will relate to (trees?)
Crying may be a way you are grieving. It also may be emotionally and psychologically detrimental to your well-being. Allow yourself to feel the sadness and then learn that life has its own timing of how a person transitions. Accepting this is a way of letting go of the burden of responsibility you have and continue to place on yourself.
During the day (not at night when you are vulnerable / crying), write a list of all that you have done for your mother over the 10 years. You have done a lot for her and I am sure she appreciated it. Learn to appreciate yourself for all that you extended to her. While this may not be easy to do, you can shift your thinking / consciousness - guide it by giving yourself different options in how to consider a situation, feel what 'letting go' feels like.
Be aware of taking good care of yourself during these times when you want things / situations to be different and you cannot make them different.
It is very sad and it hurts when someone we love says they want to die. Especially when we want to make their quality of life 'better' and we cannot.
I understand how they feel. If I were in my friend's place, I would not want to live either. And yet, it may be or feel like a cruel reality that we cannot go when we feel we want to. I realize the limits of what I can and cannot do. What I can do is pick up the phone when he calls me 4-5-6 times within an hour, full of anxiety and fear. I can tell him I love him. I can bring him goodies to eat when I visit. However, I cannot change the foundation of his situation. Showing compassion and patience to another - and our self - being present - is often all we can do. AND that is a lot.
Take care of you and honor how you feel.
Let Go and Accept.
Gena / Touch Matters
I wasn't close to folks after high school but did see them periodically and we had nice visits, but always kind of at arms length.
Now I'm in a position to transition dad to hospice and figure out what to do with mom. I see bits and pieces of advice on these forums that apply and I really appreciate the wisdom and life experience shared here.
Ultimately I have to deal with my feelings and make decisions on how to help mom and how much to try to improve the situation for mom when she says she just wants to be done.
Reading the perspectives of people here expands my imagination so I can ask: Does my mom really want help? Does she need help but she get's in her own way? Is my mom just selfish and mean? Is my mom just tired and done? What would I want in her shoes if I hadn't developed any true friends over the years and I was losing my mental faculties so I could no longer track my favorite causes and support them?
All the conversations here have helped me to better understand where I am at with my mother and I thank everyone for their comments.
Which you know, that regardless of what, she will be unhappy regardless of whether you have her in your home.
She may need to know that she is heard and you care for her. Yes it will likely keep repeating.
Everyone is different and everyone comes from different situations, but it seems so mean to say those things to an elderly parent.
Either let it go (let it be) or get her out.
As sad as these conversations were, I got to connect with my mom on such an intimate level, I got to know her better, and I will always cherish having had them with her. And her attitude actually improved over time. She still maintains that she is ready to go, but she’s generally no longer anxious about it. I think she (and I!) have finally accepted that she will only pass when it is her time, and no one can say when that will be.
It is a special kind of tragedy to be long distance from a loved one in decline. Since I’m no longer with my mom on a daily basis, and my mom is also hard of hearing, I just do what I can to help her remember she is loved. I send her notes and treats, visit as often as I can, anything I can think of to make sure she doesn’t feel forgotten.
If you are asking how to make things better for your mom, it seems as you clearly know what to do. Don’t be offended or hurt if people suggest you get her out - this would be the only solution for many of us.
You say she has dementia, but she is at least able to communicate and text. if you are not going to pick her up, you might as well block her texts. This is less cruel in the long run - then she will not anguish and waste her time begging you and ultimately dying holding out for false hope.
How terribly terribly sad that you even brought this dilemma to a site with the word “care” in it.
I’m sure you will get many “high-fives” and some irrational consolation from this crowd if you choose to do nothing but feel sorry for yourself.
I am always amazed that some people institutionalize their parents and then spend time on this forum feeling sorry for (not their parents, but) themselves and commiserating here instead of actually VISITING their parents.
Anyone advocating for NH should live in one for a week. They will know how lonely it is. If it is not your children’s responsibility to look after you when you are frail and make you happy, whose responsibility is it - some underpaid and overworked strangers in the nursing home? If you cannot care for your family, do you really think strangers will step in and do that for you? Wait until you are old and frail and your children dump you at some facility and you’ll see what it feels like to be forgotten.
These are my opinions, not an attack on anyone.
Opinions that validate decisions may be why some are here, but not all of us.
The people here giving you lectures about what YOU are "doing wrong" are seeing only one side of a two headed nickel. And every time you toss it, YOU lose. Mommy wins that game because it's rigged in her favor and you're set up to be The Bad Guy every time. I know because my 95 yo mother invented that game! Just tonight she didnt answer her phone 4x in a row when I called her at the Memory Care, which made me nervous......of course. She then calls me back 30 minutes later sounding half dead to croak out that she has a fever. Oh, of what? I ask. Oh I don't know, my girl is here taking care of me. Great, put the girl on. On comes the CG who is nervously laughing in an odd way when I ask about mom's fever. She has no fever, the CG says, and mom is WINKING at her from her wheelchair. And the band played on. Just another ploy on mother's part to see if she can keep me awake and worrying tonight. For NOTHING.
Fact check everything mother tells you with the staff. My mother tells me she's alone like a dawg and assorted other Lies but when I call to fact check, she's yucking it up in the activity room with the other residents or kissing up to the CGs. They've put her on the phone in the activity room when I've called and her voice immediately gets hoarse and weepy from happy and jovial when she hears it's ME on the line.
Don't automatically buy into the b.s. without fact checking first. If it turns out she's depressed, get her a psych evaluation and some anti depressants. My mother takes the max dose daily and has since I got her doc involved in 2011. She requires 24/7 care in managed care due to being wheelchair bound and taking 87 falls, having AFib, pulmonary hypertension, CHF, neuropathy and chronic gastro issues. So yeah, living with me would mean I'd have died long ago. Others who lecture have sweet little old ladies for mother's and are clueless the levels of manipulation these women are capable of, even with dementia!
I've been called everything from "cold" and heartless to truthful and a lifesaver for my truth I speak here. I tell the other side of the story many of us face and suffer with. I'm a 64 yo only child with chronic stomach issues and anxiety from the suffering my mother has caused me my whole life. So I like to let others know it's OKAY to vent, it's OKAY to place a parent in managed care, it's OKAY to be human and to CRY UNCLE and say ENOUGH. It's OKAY to take care of OURSELVES too, in all this. We matter too, by God! The elder is NOT the only important person here! Keep that in mind.
With medical science as it is, I suggest instead seeing the NH-MC phase of life as just an increasingly routine phase of adulthood. One that can be handled to provide at least some level of contentment and/or independence, but it's up to the senior to at least try.
What can you do?
As soon as you see the first word of abuse, and that is what she is doing, delete the text. Don't read the rest.
Tell her "Mom, I am sorry you are feeling down. When you participate in social gatherings you will probably feel better". repeat as necessary. Copy and paste is great for this.
Remember, you cannot make her feel anything, she is choosing to feel the way she is. She is hoping to make you feel bad. That is unloving.
When I was younger, dealing with my parents attempted guilt trips I would say, "Wait, can I call you back? I need to go pack a bag, apparently I am going on a guilt trip."
They never thought it was funny but, I did and it changed the subject to what a smart ass I was and I would say, "Yep, beats being a dumb one."
They would usually have something else to do at that point. I sure wish it was still that easy to get my mom off my case.:-)
Maybe saying, "It sounds like you got a new job! Travel agent for guilt trips." Could be the next diversion tactic. Hmmm?
One thought is :
Is this the most appropriate placement? Perhaps a lower level of care is possible like an assisted living near you.
In my family, my brother is a nice guy but he does not provide the same kind of emotional support that I do to my mom. (Also depressed and lonely for my attention and care. )
Texting is so cold and distant and cannot substitute for really loving conversation. Perhaps the social worker can help provide equipment that can assist her in connecting better with people who love her. Isolation really is such a killer to older adults. My parents are now starting to thrive when they went to a senior housing situation instead of isolated in their old house alone and at risk.
Im also struggling how to fill up my mother's emotional tank from a distance. It's incredibly difficult..cause all they long for is you in person holding hugs, Touch, Laughter and love.
Im praying for you and God's wisdom in this immense struggle .
Blessings..
ASD3456 I understand how helpless you must feel. The extreme fix would be to get her in-home care where she could live with you but have aides to care for her most of the day. I'm not sure what your finances are, but it would probably cost as much or less than a nursing home. You can also apply for Medicaid Community care which will allow in-home care. Would another facility be better for her? These are hard choices....
If all this is out of the question, and as someone else suggested, can you/brother hire a personal "companion" to join her in NH activities, do crafts, play music, color, go through picture albums, etc? Regular staff cannot possibly give your mom the time and attention she needs to pull her out of herself and participate.
Can she be fitted for a hearing device? Being able to hear better can be a game changer. Wireless headphones to enjoy TV were a godsend for my mom.
Bluetooth earplugs can help her listen to the music she loves.
There is a phone with video that can spell out the dialogue (research "captioning videophone") where your mom can visually connect to you and her family & old friends.
Is she on antidepressants? Make sure she is not being over or under medicated.
Can you have a clergyman from her religion to go to see her each week?
Can you take her out for an extended visit during the holidays? Can brother do it on some long weekends?
This is a problem that is not easily solvable - it takes a LOT of brainstorming and a concerted effort on all parts. Most of all, put yourself in her shoes, and realize the only thing that will make your mom 100% happy is to be back with her family. If this is an impossibility, create a dialogue whereby she can express her sadness, and you can accept hearing it without responses that are clouded with guilt. You are NOT guilty - it is just an unfortunate circumstance. Continue to be the loving daughter you are. I wish you the best.
And speaking of someone who could use therapy, ignore Bevthetroll. She needs a hobby.
Pattention if deemed a problem will get medicated and can end up like a Zombie.
Nusing Homes make you feel like you were dumped off in He'll, you feel Unloved, you are Depressed and your will to live diminishes.
The only thing that will help your mom to live longer and be happier is to let her come live with you again.
She will die in the Nursing Home alone and unhappy.
The patients are really ignored except to give them their meds and food.
I know this from 1st hand experience.
If you need help going to the bathroom, they won't answer your button you push for help and you won't be able to hold it and you will end up sitting in your own urine and feces for up to 45 minutes if you're lucky, could be longer.
Praters that mom can live with a loved one and hire some Caregiver or Sitter help.
Install Cameras so if you have to leave the house to work, ect you have 24 7 viewing of her from your cell phone or computer to make sure she's ok.
Bev, all you did here is guilt this person and shame them. If you think the mom should be at home, why aren’t you offering to move in and take care of her?
They couldn’t give the care mom required anymore. They didn’t ask about taking Mom elsewhere. Mom is where she needs to be and it’s emotionally hard on everyone sometimes.
Stop already. Please.
Also, would you like your kids to place you in a facility where you do not want to be?
FunkyGrandma59 gave great advice in my opinion; that is adult daughters and sons are not responsible for mom's happiness. Letting go of this "I have to find a way to make mom happy" voice running in your head is one of the hardest things to do but it can be done with time, practice and self love. Love and prayers to all dealing with this. You are a good daughter and are doing what you can.
If various approaches have been tried, antidepressants given, social and exercise activities offered to her in her NH but she chooses to not participate in any of it; then things are just not going to change. Being kind, offering nice notes/cards, treats and brief calls/visits if you can (if does not upset you too much) are good; but do not allow yourself to be draw into any drama, guilt tripping, or nasty lashing out behavior. There is no rule saying you have to become your mom's personal punching bag. Walk away if that starts to happen, nicely say I have to go now or I have to end the call now.
I am dealing with this now too. My mom (85) has been in a great NH for over a year (dementia, COPD, diabetes, cannot walk, depression). She refuses to do anything, will not participate in any activities, will not socialize with any other residents. She stays in her room with the TV blasting 24/7, with the lights out and the blinds closed. Yes, she is on 2 Rx meds for depression. Yes, the staff, her geriatric physician and geriatric psychiatrists have tried many things. Mom refuses to do anything to help herself in any way. She refused hearing aids; needed them 10 years ago. Sometimes she refuses to shower (of course they have to take her to the shower room, she cannot walk on her own). She refuses to leave her room, even to go out side when the weather is nice and NH is on beautiful grounds right next to a golf course.
The outbursts, lashing out, accusations were just to awful for me to take. Every call or visit turned her into a raving bully and me into a mental reck. I have had to go almost "no contact." Other than sending her simple nice notes/cards (Happy Thanksgiving) or dropping off treats every so often (I do not visit, I just do the drop off) is about all I can do. I am an only child, no sibs to share this burden with. Only one living uncle and bless his heart he does visit mom every other week, about all he can take.
Finding and working with a therapist for you, is also a good idea. I have been working with a wonderful one for almost a year now. Your qualify of life and your mental heath are key here too, right! Crying every night is not good for your quality of life much less your mental health. Working through this to accept that you cannot make mom happy is had work, but that work in time will ease the pain.
Love and prayers to all going through this.