I've been away for awhile but things changed rather quickly back in December. Now I'm back and need some advice desperately. Any thoughts?

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marigene Asked February 2021

I've been away for awhile but things changed rather quickly back in December. Now I'm back and need some advice desperately. Any thoughts?

In late November, early December; my mom was diagnosed with a blood filled cyst near her right kidney. Doctor's said that she was not strong enough for surgical repair so she is terminal. They also found a large mass in her stomach and made the supposition that it is benign but we truly don't know the status of that mass as no further testing was done. We were trying to have her placed in a nursing home but due to the extensive care she needed and the COVID situation in our nursing homes they refused. I decided to bring mom home. She had stated that she did not want to linger but also wanted to be with her family. I was trying to honor her last wishes. Well, miracles do happen because its been almost three months and mom is still with us! She has recently begun walking with a walker, her appetite has improved 100 percent since she came home. I've had her on hospice but as she is not declining and actually seems to be getting stronger they are discharging her. While this is all good news it also brings up the idea of a nursing home again. I have been taking care of my mom 24/7 since December 4. I've had a respite of about 10 days total that were not all together in these three months. I am 55 years old, my A1C is over 10 , I cannot get it down. Partly because all of my energy and strength is going to ensure that mom has what she needs and wants while ignoring my own needs. I don't always take my meds. I also recently found out that I have to have a CPAP w/oxygen as well. Then last week due to mom not complying with the proper way to lift her I pulled a muscle in my neck and shoulders, ended up in the ER. While there they did some ex-rays of my neck and discovered that I have stenosis and degenerative disc disease in my neck and extending into my thoracic area. My husband had this problem and it resulted in fusion of his c3-c7. So now I am scared I'm going to need that surgery too. With all that being said, I cannot keep taking care of my mom. I love her dearly, am so proud of how she's boucing back but I just cannot do it. If I had rotating help from family members it might be possible. My sister has severe heart problems and my brother is that one family member that everyone has, you know the one that sometimes we wish they would just disappear... My daughter is willing to help but she works 12 hrs a day 4 days a week (sometimes 5) and I really don't want her to give up her life. We have decided to look into declaring incompetentcy and placing her in the nursing home forcefully. That's a terrible word, I hate using it but mom is completely unwilling. She is declining mentally although to a certain extent she is still okay. However she is physically incapable of caring for herself. Absolutely cannot live alone. Thoughts? Opinions?

Care Decisions Family Caregiver Senior Health Skilled Nursing Facility

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score 1 · Answer 1

This is going to be a very harsh solution but you need to do the hard things right now for everyone's sake. Next time your mother falls or needs any assistance more than what you are comfortable doing call the emergency squad to take her to the ER. Then when they want to discharge her tell them it is an unsafe discharge as you can not assist her due to your own conditions. Do not under any circumstance let them guilt you into taking her back into your home. Practice saying "No, I cannot care for her." They will tell you it's only for a little while; they will say that it's your obligation, etc. Just keep saying NO. They will find a place for her. She will be unhappy. She will be safe. You will be unhappy (for a while). You will be able to have a life. My father would always tell the doctors that I would take care of him when he returned home. They wouldn't even check with me because they wanted so badly to get him discharged. You must be VERY FIRM. It is hard, very hard but it is necessary, very necessary.

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score 2 · Answer 2

Marigene, I’d strongly suggest that you make an appointment to see the boss of the social worker who said to you "and if you abandon her then you would be in trouble". The social worker may see her ‘client’ as your mother, but that does not allow her to put you and your own health in danger, nor to make threats to you. If this is her method of solving her own work placement problem, you are probably not the only ones to have heard this line. Quite sincerely and for the sake of other people as well as yourself, you should let the manager know that this has been totally inappropriate. Neither you nor your mother have received the advice you deserve about how to cope with a difficult situation. Then make sure that you get some much more appropriate assistance.

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score 0 · Answer 3

If she is mentally competent then she needs to be snapped at when she is behaving like a child.

I am sorry but, a loving mom doesn't put her wants above her daughter's wellbeing. She doesn't care what she is doing to you and quite frankly, that changes the game for me.

Your dad was very unkind to extort a death bed sentence from you and your sibling. Mom is a grown woman and she can make her own choices, that doesn't mean that you have to go along. You are an adult and you no longer have to do what she says.

Call APS and report her as a vulnerable senior and that you, as her daughter, are going into the hospital and can not help her. Tell her that her lack of care for your wellbeing is costing her choices, because you refuse to be a statistic because she is so selfish that she can not see or more like she refuses to look at what her selfishness is doing to you.

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score 0 · Answer 4

Hospice should not be discharging her. imo.
Get the doctor on your side.
The mass in her stomach has not been diagnosed. Have it checked for changes.
If she is in fact improving (and not just rallying), get her assessed for the surgery (blood filled cyst near rt. kidney) again.

You can change hospice providers.

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score 0 · Answer 5

I made a couple of phone calls yesterday, I spoke to the social workers at the hospice agency we are with and at the home care giver agency we use. They are telling that they view mom as mentally competent, that even though she is physically incapable of taking care of herself there is nothing I can do. As long as she will not voluntarily go to a nursing home I cannot force her. If she were to fall and hurt herself (she's currently averaging 2-3 falls a week just because she gets in a hurry and does not wait to have assistance) , have a stroke, heart attack, etc and need to be hospitalized then I can have her transferred to a "skilled nursing facility" (aka: nursing home) temporarily that could then transition to full time nursing home. I even had one of them say to me "and if you abandon her then you would be in trouble" . Apparently it's considered abuse/neglect; as if I would ever do that anyway. But yes instead of offering advice to help me they just wanted to tell me what I cannot do. I even tried to explain that physically, I've reached the end of my strength and that is just the way I put it. If the way I am feeling were on a 10 based countdown, I feel like I am at about 5 or 4. I'm on reserves and it's about dry. Right now trouble is coming, I know it's coming, I can see it. I'm going to end up in the hospital and then what's going to happen to mom? I have two more phone calls to make on monday looking for help, if it does not exist I have made a decision, my mom knows and is perfectly happy about it. I have sleep lab on March 12 to determine what my numbers are going to be on my new medical equipment (cpap w/oxygen) we are taking mom to my home. My husband has the next couple of weeks to make any necessary modifications to our home. We live in a trailer, hallway. a doorway or two need to be wider as well as building a ramp so we can get her in the front door with wheelchair. It still does not give me any downtime may even be worse than it is now but at least I'll be home again. I'll get to see my husband every day instead of once ever couple of weeks for a few hours. I will be in the right area to see my doctors, try to get my health under control. Any ideas for agencies I can contact for help would be appreciated. My phone calls on monday will be to the local county commissioner for the guardianship issue to verify what I was already told and if his office can help me find a solution. Also calling the county DHHR.

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score 3 · Answer 6

My heart goes out to you. However, if you don't slow down and take care of yourself...mom might outlive you. You have serious health issues and are running on fumes. I hope you get her the placement she needs. You are my age and I understand not wanting to hurt her feelings, but you have made it clear in your post you cannot physically keep this up. Sending you a hug and understanding. -Sunnydayze

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score 2 · Answer 7

My friend's dad had dementia. He had to have a hospital stay and from there they took him temporary (so they told him) to a nursing home. Once he got settled they made it permanent. Please take care of yourself. You've always got support from this forum.

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score 3 · Answer 8

I’d suggest that your own GP or specialist doctor should say that you MUST stop lifting your mother, provide any physical assistance, you MUST arrange care for your self, have an operation – or anything else that means you can’t keep doing this. You can’t discuss this with your mother, it just has to happen. Then do it. I’m sure that it will upset your mother, because things have gone so well for her in all ways since you started waiting on her hand and foot, but you can’t wait for her to agree.

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In my head, I know you are correct, my sister and my daughter have both been telling me the same thing. The time for talking is done, it's time for action. My heart on the other hand is having a problem accepting the inevitable. I don't want to hurt her feelings and I don't want her to be disappointed in me but that's my fear. I simply need to find the strength to do what needs doing. My sister and I made a death bed promise to my dad; we would always see that mom was taken care of .I can't do it, she can't do it so this is the best thing for mom. I just wish she were willing.

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score 2 · Answer 9

Thank you , both of you for your kind words. It helps to know that other caregiver's understand the decisions I'm facing. I do not want to do go against her wishes o get her placed but I think we have too. She is completely unwilling to consider it. I am trying to come up with the words to ask her why she is so unwilling, to find out what she is afraid of or scared of... But anytime a nursing home is mentioned she clams up and just stares out the window, often falls asleep to avoid the issue. This is a method she uses with other issues as well, even something as simple as eating a meal or taking a bath. When she's in that moment where she does not want to do something she avoids the discussion. I am trying so very hard to be respectful and let her retain her independence. To let her still have a choice. Lately I have been feeling a lot of impatience and it's so very hard not to snap at her. I compare her actions to the actions of a 2 year old often.

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Would you let a 2 yr old treat you that way?? Also promise to dad can be seen as one of two things. Nursing home care with supervision is taking care of her.

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score 2 · Answer 10

While yes it is great that your mom has improved as much as she has, it has obviously taken its toll on you physically. You are, at this point, more than aware that you can't keep on caring for her as she requires. And that's ok. You did a great job for the last 3 months or so, and now it's time to get her placed in the appropriate facility, where she will receive the 24/7 care she needs, and you can work on getting yourself healthy again. No ones care(no matter how much we love them)is worth risking our own health over. You're important too you know? Please take care of yourself. God bless you.

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score 4 · Answer 11

I think that you understand that you cannot continue in this care. You have written it out perfectly and there are many things involved, but the math can only add up to placement. This will be more difficult now that you have taken her into your home, as I am certain you know, especially since Covid-19 precautions will certain last until fall and perhaps longer.
I think the answer is placement. The question is always how to get this accomplished. It often requires the desperation of ER Dump and that is desperation indeed.
I am so sorry for all the things you all are going through. Chronic pain and delibility is so depressing. I wish you the very best. I hope someone has some idea that can be of some real value. My sympathy nets you exactly zero. I am so sorry.

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I've been away for awhile but things changed rather quickly back in December. Now I'm back and need some advice desperately. Any thoughts?

11 Answers

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