My mom has been in a nursing home since July 2024, after a fall at home and tests that led to a diagnosis of stage 4 metastatic neuroendocrine carcinoma of the lung, which had spread to her liver and bones. We had no idea because that cancer typically doesn't present symptoms until it is already metastatic. She also has dementia. She was receiving cancer treatment initially but she was not tolerating it well, nor was there any chance this type of cancer would go into remission with treatment once it metastasized, so she has been in hospice care since December 2024. There are no signs the cancer has progressed much since then, but her dementia is progressing very rapidly.
Prior to the nursing home, she lived with me. Since she went into the nursing home she has been asking and at times demanding to come home. I assumed this would wane over time and she would accept being there, but she hasn't. It's a good nursing home with a very caring staff, and they make sure she is involved in activities when she'll go. I haven't outright told her she will never get to come home because I don't want to upset her, and she will likely forget anyway. Her care team agreed that was best too. I try to redirect the conversation but it always comes back to this. The last time I visited, which was day before yesterday, she made a scene in the hallway demanding I take her home with me when I left. Today she had the nurses call me (she doesn't have a phone) and again she demanded to come home and yelled at me when I gently told her she couldn't and tried to explain why. These calls happen two or three times a week.
As for explaining why: Other than her very significant health problems, the house I live in is very rundown and not suitable for her in her condition. I also live on the second floor, and there is no way up and down but a staircase. I'm disabled myself and in the process of applying for better housing. I won't be able to care for her at home even then, but I certainly can't now. It would be bad for her, and yes, it would also be very bad for me. I tried to care for her too long on my own before the fall and the cancer diagnosis. My mental health suffered greatly, and I can't help but wonder if I'd gotten her skilled care sooner if they would have caught the cancer sooner.
Sorry for rambling but I'm not sure what I should do. I visit her twice a week, though the past couple weeks because of how our visits have been going, I have only been able to go once a week. My disabilities are mental health related (Autism, ADHD, Major Depressive Disorder, Generalized Anxiety Disorder) so there is only so much I can take. But it feels wrong to me to only go once a week. I'm also thinking about asking the nursing home not to let her call me anymore because when she does it is always either to demand that I visit right then and there, demand to come home, or both. Today it was both, and I just visited day before yesterday. Gently reminding her I was just there day before yesterday did not help.
It feels selfish to ask them not to let her call me, but at the same time, she only seems to get more upset. I am rarely able to calm her down anymore. Am I making the wrong choices only going once a week and considering asking them not to let her call? Is there a better way to handle it? And if anyone has any advice on how to deal with this in general I would certainly appreciate it. She's only 69 years old, 70 this May if she is still with us then, and while I knew she couldn't live forever, this decline was so fast and abrupt at a relatively young age that it has left me reeling. Again sorry for rambling. Thank you.
Is there an anxiety medication your mother can be put on for when she has this outburst of wanting you to provide what you are just not able to do anymore. I wish I had a better suggestion but I know what you must feeling and going through. My sister, 80 and I, 81
are my Mom caregivers I have fibromyalgia and can hardly move some days my sister has very high bld pressure and mom refuses to do nothing to help us help her we have gotten hospice involved but she refuses everything they suggest we are at our wits ends with her having dementia and still calling the shots she will be 100 in May. She probably servive my sister and I. You are not alone the guilt we feel is the worst. I know.
Just as you'd redirect a demand from mother to go outside in 10 degree weather with no coat, redirect her demands to go home by telling her "when the doctor says you're well enough."
Best of luck.
Definitely cut back visits, once a week is plenty. Please ask the nurses to not make calls for Mom, it only increases her anxiety (and yours). You only want calls from them regarding emergencies. I would insist they increase her anxiety meds as well. Hospice is supposed to keep her comfortable, not filled with anxiety. I know it hurts that she is so upset with you, but she is not happy with what is happening to her and you can't fix it. You have done way more for Mom than most sons would ever do. Don't blame yourself!
My second husband was suddenly diagnosed with Stage 4 cancer, when he was never sick with a cold! He had surgery, brutal chemo, and still died within a year at the age of 33. It was a shock I will never get over.
Your Mom is in a safe place, and cared for by a team of professionals. Don't dwell on the "what ifs" and continue taking care of yourself. Good luck finding a new place! You deserve it.
Also ask if she tends to be worse after you visit. If so, seems you are the catalyst. Maybe cut down on visits or don't visit as all. It would not hurt to take a break. Mom is safe and cared for. Your mental and physical health is important too.
There is nothing you can do to prevent her being miserable. This isn't a happy or a good time in her life; she has lost everything including her health and her mind. There is no road to happiness or acceptance in this for anyone. She will continue to be miserable and sadly you will be forced to stand witness to her misery until she is at peace.
The only good news here is that she is in care. She now requires several shifts with several people each caring for her. Care in home, even by a qualified and dedicated RN, would be IMPOSSIBLE. There is no question of guilt here because guilt requires responsibility, and no one caused this or can fix it.
Given that there will be no changes now in her behavior it is time to talk with staff and have entered in her care plan that she can call you AT MOST once per day. You must accept that call will be miserable; SHE is miserable. So keep that call short. Let her know you are sorry. Let her know coming home isn't possible at present. Then get off the phone. You will not convince her of anything.
I hope when this is over you will be able to stand relieved that she no longer has to suffer. Encourage now, hospice to provide ADEQUATE medication to keep your mother as calm as they are able. Speak with the admins and admit that you understand she has a cancer that is killing her and will kill her, and that her mind is too broken to understand. Tell them you want PEACE for her, and that it is also crucial to your own well being.
There is no shame in having cancer. There is no shame in being demented. There is no shame in being a family member devastated by something that has no answer but the peace of death.
I am so very sorry. This is a tragedy, and many lives end in physical and mental suffering. Depend on and ask Hospice for their guidance in getting SUPPORT. They have clergy and social workers to guide you and speak with you. That is paid for by governmental funds and they should already have reached out with that information for you. ASK THEM TODAY.
My heart goes out to you.
I had to place my mother after a serious stroke kicked her dementia to a much higher degree. She constantly asked to live with me, visit me, and that she felt like she was in jail. I knew she was in the right place but totally understood the feeing of being in jail, I’d feel the same way I’m sure.
It’s gut wrenching and for me what sort of helped was to remind myself repeatedly that her living with me was literally impossible. Also that she was in a clean place with a caring staff, a truly fine facility and she was getting the best care possible.
It sounds like your mother’s place is very good, remind yourself as often as you need to of that. I wish you the best in these very stressful times..
I would also make sure that her doctor has her on the right medications for her anxiety, and if only visiting once a week will keep your mom calm as you seem to be the disruptive catalyst then only go once a week, and tell moms facility to keep her calls to a minimum.
When my Mom (98) started asking about going home, I had to use "therapeutic fibs". Such as "your Mom and Dad are visiting the old country" which would make her smile, as her parents did that on a regular basis. Whenever she asked to visit one of her sisters, I had to quick make up a fib that she would believe. It worked :) My Mom's fall also was the start of late stage dementia, as prior to that she was thinking fairly clear.
Cancer is awful and I'm so sorry for the distress this is causing in your lives. Please don't second-guess yourself or feel guilty. You've done as much as you could considering your own challenges. I wish you peace in your heart as you create healthy boundaries to protect your wellbeing.