My mother has a terminal liver cancer.
During past 12 months, she visited the emergency room several times.
She would usually spend one week in the hospital and go home...
Doctors often removed water from her lungs...
She went to the emergency room again early in October.
The doctor suggested that my mother should go to a nursing home and get some physical therapy.
The doctor noticed that she could not stand at all...
After six days in the hospital, my mother was transferred to a nursing home.
A nurse, from the nursing home, called me about her condition. He told me that she still is unable to walk...
My mother has been in the nursing home for two weeks.
Last week, she really sounded agitated on the phone.
On Wednesday, she told me to bring some food to the nursing home.
Later on, she called me while I was driving to the NH.
My mother told me to not to show up at the NH...She said something about the nursing home kicking her out if I show up...
I told her that I will not show up. Then she called me again. She wanted to make sure that I will not show up.
On Thursday, my mother called me and stated that she is coming home...I was surprised. I called the social worker...She told me that my mother is not being discharged...
On Friday, my mother called me and stated that she really wants to go home...She cried...
I asked her if she is capable of standing at all...She yelled at me to be quiet...
I told my mother that I will speak to the social worker about going home. I told her that I have to follow proper procedures. My mother kept on crying...
I tried to speak to the social worker...However, she went home early...I
have to speak to her on Monday...
On Saturday, my mother called me and wanted to know what time I will take her home...Again, I had to tell her about the social worker...
I am wondering if anyone else had a similar experience...A parent asking to go home from a nursing facility...
I am going to speak to the social worker about my mother wanting to go home...
If my mother comes back to her apartment, she will need somebody near her 24 hours a day...
I do not have a wife...I do not have any children...I have no brother or sister...My parents divorced a long time ago...
I don't have a full-time job at this time...I could stay with my mother most of the time in her apartment...But, I will have to go outside at times. I will have to hire some health aide...
I feel that I have no choice but to respect my mother's wishes...Once she comes back to her apartment, I will be very busy taking care of her...
I feel uncomfortable telling my mother that she should stay in the nursing home...
On Wednesday, my mother was worried about getting kicked out of the nursing home...On Thursday, she wanted to go back to her apartment...What is going on with her mind?
I have not been able to visit my mother in the nursing home because of Covid 19 restrictions...
Thank you for reading.
I know that this is heartbreaking for you. You cared so very much for your mom.
I am deeply sorry for the loss of your mom. Wishing you peace during this difficult time in your life. May your mom Rest In Peace.
Today, my mother will be cremated...I am going to the mortuary for cremation. I want to see my mother's face one more time before she is cremated...
My mother died one week ago...
Yes, my mother's battle is now over...No more pain for her...
Yes, I need to take care of myself...I have to start a new chapter in my life...It is what it is...
Would you consider getting a professional opinion from someone like getcaribou.com? You might feel some relief knowing you've checked over your plan with someone who has helped many others through a similar situation
So, if you can get mom home for awhile,, ask hospice.. Hospice is really good. They will evaluate her to see if she qualifies... most likely she will. Leave the decision to Hospice... Ask if they will evaluate.. Ask if she does qualify, can she come home to your house with 24 hour care...
Liver cancer and pancreatic cancer has a timeline, usually... I have had a couple of my LO's pass away with these cancers.
Just call her insurance or social worker and ask for evaluation and that mom would feel better at home.. go by what they tell you.. They will give you true answers regarding your mom and you, and things you will need to know.
My mother was diagnosed with liver cancer about one year ago...
One year ago, she had no problem walking around...Now, she is stuck in bed all the time...
She had hospice before she decided to go to the emergency room early last month...
13 months...I guess my mother's time is running out quickly...
With the help you would get from Hospice it might be doable.
You would get all the equipment you would need, all the supplies, medication delivered as well as all the other supplies and support you would need.
But you should have help, you can not be a caregiver 24/7 everyone needs a break.
Contact Hospice and they can arrange services in your home or in the Nursing Home where she is.
At least at home you can visit her, she may feel more comfortable at home.
(wondering though if your home was also her home before her last hospital stay? If not is she talking about her "home" where she was before and if you bring her to your house will she be "home") Often a person will say they want to go "home" and they are not referring to a physical home but a time or place when they felt well, healthy, with no pain or limitations. Some may also refer to the afterlife as "home".
Bottom line IF you can care for mom and if this is something you want to do it can be very rewarding to care for someone during their last days, weeks, months... With that said it is difficult to deal with emotionally, physically, mentally. But I would not have changed a bit of what I did caring for my Husband I would not have wanted it any other way.
I am not a Nurse but maybe Moms Lliver cancer is causing confusion. The problem with home Hospice is that family does most of the work. An aide will be provided maybe 3x a week as will a nurse. When the aide is there you can take time away. If u need more time, see if you can request the aide stay longer. You can get respite every so often.
Do not call the Social Worker. Her job is not to work with the patient but to work for the patient. You need to talk to the DON (Director of Nursing). She should be able to answer your questions concerning Moms confusion and taking her home for Hospice.
What I wonder is what ru going to do if called back to work.
My mom’s social worker arranged meetings along with nurses and other staffers such as PT and OT to discuss future care. I had the same experience with my dad and brother’s social worker.
The OP has already had a meeting with the social worker and she was knowledgeable and helpful about his mom’s case.
With Covid though these larger meetings most likely aren’t available in person. They would have to be online or by phone.
Is your mom in the NH for care or for rehab? You said the doctor suggested she go to the NH for PT because she couldn't walk. If she is in the NH for rehab, they should be having meetings about her progress...usually the DON, someone from PT, someone from OT (if she's receiving OT), a social worker and the patient will meet periodically to discuss progress. If she's in for rehab, you should contact the NH and ask if 1) they are having these meetings and 2) if they are, can you be included? It should give you a better idea about what's been going on with her, health wise.
Is your mom currently under hospice care, or is this something you're going to look into once she's home? Hospice will give you medical equipment, a hospital bed, etc., as well as have an aide come several times a week to help you, should you decide to take her home.
But I have to tell you - I had my mom home on hospice care until she passed. The last few days she was completely bed-ridden. I had to make sure someone was at her side at all times, because I was afraid if she awoke and tried to get up, she would have a bad fall. Either myself or my husband sat at her side for 24 hours a day from Sunday afternoon until she passed early Thursday morning. I had a lot of support, from my husband, my kids, and my sisters. I don't know if I could have done it if I had been by myself, as you say you are. Hospice was wonderful - don't get me wrong - but they could not provide me with a person to sit with me and mom, especially in the new world of Covid. The bulk of the responsibility was on me.
Please, before you make a decision based entirely on emotions, think about everything you will need to do for mom once she's with you. If it doesn't work out, it is going to be very, very complicated to get her back into a NH once she's come home to be with you.
Another thing to think about - while it's all very good and well to plan on hiring help to come in once you need it, you might find that it's harder to find help than you might think, again, especially in the new world of Covid. There is a serious shortage of professional caregivers. If you decide to bring mom home, you might want to get outside help buttoned down before you actually bring her home.
Good luck!
What was said during the "meeting"? My mother was not doing well at all...She was not eating...She could not stand or walk...
Hospice was suggested...
My mother wants hospice at home...
She was in hospice before...Back then, she got the oxygen machine...
She got out of the hospice because she wanted to visit hospital...
Thanks for the response...
Please do not refer to yourself as possibly being selfish because you aren’t able to provide adequate care at home.
I am pleased that you spoke to your mom’s social worker which was going to be my next suggestion.
The social worker sounds very knowledgeable and informed regarding your mom’s case.
Your mom may have a desire to go home but it’s apparent to me that your mom is far beyond being cared for at home.
You should not feel like you are letting your mom down by not following her wishes. You are doing the exact opposite by supporting her while she is being cared for in the best possible place.
Let me ask you something. When you were a child and asked for something that wasn’t good for you. Did your mom automatically give it to you? No, she probably didn’t hesitate to tell you no for your own good, right?
You can’t say yes to your mom
leaving the facility because it is clearly not what is in her best interest.
Not to mention it isn’t the least bit practical. She can’t walk. She cannot use the restroom. Are you mentally or physically prepared for that? I doubt it.
Am I trying to dissuade you from taking her home? You bet I am. Why? Because it isn’t in either of your best interests.
Oh, one more reason too. I took care of my mom in my home for 15 years. Caregiving is an extremely tough job that few people are truly prepared for.
If I can spare just one person the anxiety that I went through I will be happy. I have many regrets.
Yes, like you I wanted to please my mom but please believe me when I say it isn’t worth sacrificing our entire life for them.
Think very carefully before considering a decision to remove your mom from her facility.
Again, I am sorry that you are struggling with this situation and I wish you and your mom the very best outcome during this difficult time in your lives.
I should be able to change her diaper by myself...A guy who is 48 years old...
I am trying to convince myself that I could do so.
Before she went to the emergency room, she did not wear a diaper...She stood up and walked slowly to the bathroom...I just grabbed her hands to make sure that she does not fall...
Now I am getting the impression that is not possible...Things have changed...
The social worker told me on Monday that she would call me back...After she spoke with the NH doctor and the physical therapist...
She has not called me back yet...I plan to contact her again this afternoon...
My mother did not call me on Sunday...She did call me on Monday...I told her that I will speak to the social worker...She said OK and hung up...
Today, she called me...I told her that I am waiting for the social worker to call me back...This time, my mother sounded upset...I guess she did try to control her emotions last few days...But, she could not do so today.
I am thinking that my biggest challenge, if she comes back to her apartment, would be changing diapers...
Giving her medicines...That should not be too hard...
Eating...I don't think she will eat anything even if she returns to her home...
I am preparing myself for her return back to her apartment...
I really have no idea how much longer my mother will live...
Caring for her a few months...OK...
Caring for her a year or longer...I don't know...I would like to work at some job...
Thanks for the responses...
In thinking about your mother’s care, safety and as comfortable management of physical needs are the two most important situations to consider first.
Your mother is obviously frightened and uncomfortable and honestly not likely able to consider what she herself needs as opposed to a sense of escaping from a situation that is not pleasant to her.Many if not most nursing home residents want to “go home” without a sense of where they want to go or how they can be taken care of there.
With that in mind, you have no way to assess whether she’d be safer or more comfortable in other surroundings or not. Getting her out of the nursing home may present a set of difficulties that you are not considering. Where she is now, she is able to be bathed and toileted, for example, with as little movement of her body is possible, and hopefully, less discomfort.
Some of your statements suggest that although you are considering the problems in her life, you find yourself hard pressed to develop solutions.
Although the gravity of her illness might not allow for medication for her anxiety, I would ask social services in the nursing home if they could recommend anything like music or occupational therapy that might give her some ability to distract herself. Music can actually be a very powerful tool, and there’s good science to back it up.
I don’t think it’s in your best interests or hers to continue to try to convince yourself that you have no choice but to take her home. If you access enough information from the nursing home staff to determine how her care could be managed elsewhere, you may find that attempting to address her situation by doing what she’s requesting is actually not what’s best for her, or you. You also need to find out what her care staff thinks about her emotional status. Some residents choose to complain to family while growing comfortable relationships with care givers.
See what information the nursing home staff can share with you, find out about other comfort methods to reduce her extreme anxiety, and defer her direct requests for the time being, until you have all the facts to think through.
I think what is missing her is that you need to speak with those in charge at the facility to really understand what is happening here. Hope you will update us after speaking with the administrator there, social worker, or whomever is in charge of nursing.
If you have decided that you are going to tackle taking care of her you should do as much research as you can. What does hiring a health aid cost? What kind of durable medical equipment will she need and will hospice provide all of it? How will you toilet a completely bedridden woman? Are you really prepared to toilet your mom? What happens if you can not afford additional aids? What are you going to do if/when the aid doesn't show up? Are you prepared to give up your entire life for the duration? And that is just a few of the questions that you should get answered to help you be the best caregiver you can be.
I am sorry that you are facing losing your mom and that she is facing her own mortality. It is a difficult situation no matter what. May The Lord give you strength and wisdom during this difficult time.
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Thanks for posing some questions that I have to think about...
I have not thought about those questions yet...
My thinking was to get her out of the nursing home ASAP and think about those issues later...
Assume that my mother is back in her apartment...How am I to help her if she wants to go to the restroom?
A good question...
Before my mother went to the emergency room several weeks ago, she actually was able to go to the bathroom on her own...
It was very hard for her to get up from the bed...But, she was able to get up if she really wanted to...She walked very slowly to the bathroom...
But, most of the time, she wanted me to help her get up from the bed...I held her both hands when she walked to the bathroom...
I think things are different now...I am thinking that I may have to hold her under her arms to prevent her from falling down...I am not sure that she is capable of standing on her own at all at this time...
Then I have to change her diaper while she is in bed?
I think the very first thing that you need to consider are your mother’s health issues. Should she be released from the nursing home? Is your mom revealing all pertinent information about her health to you?
Are you considering being her caregiver simply because you feel an obligation to do so? That isn’t the best reason to be a caregiver. Caregiving is very hard.
Do not feel as if you have to be the hands on caregiver to be responsible for her. It’s perfectly understandable to allow a staff at a facility to care for your mom. The nurses will alert you of her situation.
Covid does make all of this harder. I’m so sorry that you are dealing with this situation.
Best wishes to you and your mom.
Are you considering being her caregiver simply because you feel an obligation to do so? That isn’t the best reason to be a caregiver. Caregiving is very hard.
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Thanks for posing some difficult questions...
I don't know if she should be released from nursing home...
Last Wednesday, she told me not to come to the nursing home with food...
She said that, if I show up, she might get kicked out...She really wanted to make sure that I don't show up. I have delivered food to the nursing home before and my mother did not warn me about showing up...
Then, on Thursday, she wanted to go home immediately...She did not want me to ask her any questions...
I am not sure how I should interpret her mood swings...
I do feel an obligation to be her caregiver...
I do not have a brother or sister...My mother divorced my father a long time ago...There is nobody else...Do I have a choice? I do not want to become a "horrible son"...
My mother never signed the health care power of attorney paper...
I do not know if that means my opinion does not really matter too much in this case...
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Thanks for the suggestion...
I guess it would be easy for me to do whatever she wants...That way I would not have to argue with her...Avoid making my mother angry...
It would be easy for me to just give in to that temptation...
I think I should take time and work with the nursing home staff even if my mother is complaining about not going home immediately...
"Don't blame me...I am just following her wishes"...That may not be the right thinking for me in this case...
Nursing staff members have called me a few times...One time to tell me that my mother is taking a new medicine. Another time to tell me that she is OK even though her roommate had some skin infection...
If your mother's cancer has spread it may be that she is unable to think, listen, or understand what is happening. She may not be able to explain her wishes or describe what is agitating her. If that is so, decisions must be made for her in her best interests - the social worker will certainly be able to tell you what happens next and what needs to be done in that case. Good luck, please let us know how you get on today.
I was not able to ask her, on the phone, why she wanted to leave the nursing home...
She insisted that I just listen and not ask any questions...She sounded very upset...I tried to calm her down by saying that I will speak to the social worker...
I will speak to the social worker...She will probably go to my mother's room and ask about reasons...
The nursing home is not allowing any visitor until next Monday...Because of Covid 19 problems...I cannot get into my mother's room until that time...
I have visited the facility several times...To drop off some meal drinks...
But, last Wednesday, my mother insisted that I do not show up to the facility...
My mother might insist on going home against medical advice...
I hesitate to make guesses, but I would be surprised if a lady with terminal cancer, unable to walk, recently discharged from hospital, were able to think rationally. It sounds as if your mother is misinterpreting information and this is adding to her anxieties.
So first, you need reliable information about her condition, her prognosis, and her care needs.
Then, you and the NH can work out in what setting your mother would be best cared for. Hospice services can be provided in home settings; end of life patients can (usually) be visited by family members; there will be a way of ensuring that your mother is well cared for.
I agree that respect for your mother's wishes should be the guiding factor for all involved, but that isn't the same thing as acting blindly on instructions she gives when her mind is not clear.
This must be very distressing for you, as well as for her, and I'm very sorry for what you're going through.
I suggest that you insist on finding out what is going wrong, before you take your mother home. You ‘feel that I have no choice but to respect my mother's wishes’ but you don’t know if she is rational – you may be doing her a real disservice if she has become totally disorientated in the last 2 weeks and this is not in her best interests (let alone yours). Talk to the social worker, the director of nursing and the manager. It might even be worthwhile ‘turning up’ at the nursing home – it doesn’t sound right that they will ‘kick her out’ if you do. Seeing the staff in person might help, even if you don’t go in to see your mother. This sounds a bit silly, but if she is likely to catch sight of you, wearing different clothes and a mask might be worthwhile. You have my sympathy in a very very difficult situation.