Mom is in a nursing home for dementia/cancer. Hospice says she can't go home without full-time care, which we can't afford. What are other options?

Coreylyn55: Good luck to you and your mom. God Bless.

Thanks, Austin; it is working out good so far-- found a good part time caregiver and she seems to be doing well at home so far.

You brought her home and did the best you could-getting home care is very hard unless you use an agency and then some of the caregivers are lazy or untrained if it is not working out and AL is not the answer you need to think about NH -you have done all you can-a lot of elders just can not be taken care of at home.

Thank you Elaine and Kika for your input. She has been home for a week now and I am searching for part-time caregivers to give me a break-- she is ok for nights for now. We have been at the point before and maybe the eventual outcome will be different this time. She is walking but stays in bed more and more, an event we were warned about. Her appetite, due to a stimulant, is still good but she eats a lot of junk. She has 2 good meals a day and still snacks non-stop, but she still only weighs 110 so I'm not too worried. I help her with her medicines 3 x day. Hospice still sees her 2 x week. I do believe that her attitude/vocal displeasure helped along her discharge. Unfortunately, for me, that aspect is still alive and well. She is totally different with other people and on the telephone. Sometimes I think I'm going nuts! The assisted living declined to take her, again-- I suspect her behavior preceded her being seriously considered. So my hands are full! And I have got to go back to work for my own survival-- she does have funds from an insurance policy to pay for her caregiver. My family would never understand paying a family member to care for her and I am not up to the task anyway. I love my mom but her cancer or recent breakdown experience has greatly changed her personality. I will continue to love her and give her as much as I possibly can; but she will do better with someone else helping her. Feedback welcome; I do feel terrible guilt! I do know that her still-constant ranting about the NH makes me feel she is better off at home at the present time.

I believe the proble here is the dementia, which is why she needs 24 hour supervision??? If really, she is not in danger and the thing that made her a danger to herself was the drugs, that is a different story. You can arrange care and then commit to care for her yourself as well. Is she capable of using the medical alert systems? These are great little devices she can wear around her neck and push a button if she needs help. The company you pay a monthly fee to will call whoever you set up -- it doesn't have to be 911, it could be you first that they call. I think these monthly services are very cost-effective, maybe $40 or $50 a month monitoring fee. Or is her dementia such that that won't help?

Bottom line is that we all have our own power. Organizations and health professionals may have their own agenda. They also want to cover their own Axxes - meaning they don't want to get sued, so they always take the safe route and recommend against everything, so they may want you to sign a waiver releasing them from liability.

My sister and I had road block after road block put up in front of us in order to get our mom out of a NH. After her second trip to the ER (because of the fabulous care ie. neglect the NH gave her!!!) we let them know she was getting discharged to her home and we would take care of her. So, we told them to give us the training needed for her medical needs and whatever else we would need. Period, end of story. It was stressful for sure, because half were against, but the honest half of the medical profession will tell you that is the best for them. Others ARE NOT the ones to control another human. I don't know if they have legitimate concerns or not because I don't know the whole story.

Truth is, nursing homes are full of disease, germs, bacteria, MRSA, other forms of staph... the list goes on and on. All that is in the air and goes through the ventilation system which will only advance a person towards deaths door. Sounds skeptical and negative, but it's true. Very good NH's are very rare.

My friend and his brother had their mom in a nursing home and the place drugged her up so bad, broke her toes by running them over with a wheel chair. They went in and physically took her out of the place, with the staff saying " YOU can't do this!" Their mom was nearly comatose and almost dead. As she was leaving, they tried putting pills in her mouth! After being home two or three days, she was completely lucid (once she got off all the drugs they had her on). The NH lied to cover up their poor care said they couldn't visit her, etc.
That was a place where people came in the front door and left out the back door. Sad treatment of our most vulnerable citizens.
Bottom line is go with your instinct and TAKE CHARGE.
As I said, I don't know all the background, or the severity of her condition, so that all has to be weighed.
Line up your resources. Then, take her home.
She has rights and I presume you have POA to make decisions?
NH's are not a prison and the staff are not the warden's. If she is unhappy and you sound like you are too, believe in yourself and do in your heart and mind what you know is best.
My thoughts are with you.
xo

Yes the student nurse does sound like a good idea; however, check to make sure that they would be covered under homeowners insurance should they fall or injure themselves in your or mom's home. Many times they are "independent" and not working for an agency and now the burden of insurance and tax forms falls on you. Remember you and/or your mom now become "their employer". The Veterans Administration has funds to assist in cases like this - the funds can be used for assisted living, nursing home, in-home care, etc.

I think the student nurse is a great idea-they can always use the money and you will get someone who wants to work.

Tina/Marie, Austin and whoever else was interested in our posts-- TM, I can so identify. My mom is on the proverbial warpath to get out of NH-- if she goes to Assisted Living (*which Hospice says, "no") she won't be much better off than she is now-- and it won't take long for her mental misery to re-manifest itself. So I am going to speak to Hospice and find out if they will give me a timeframe-- "if she is still doing great by (date) she can go home with some supervised care and her emergency alert system"-- and see if they go for it. The NH has done a FANTASTIC job of healing her physically and medication-wise. I have GOT to work but may try that nursing student idea I saw posted. That's more medical experience than the caregiver I had before-- and we have a nursing school within ten minutes of here. Ya'll hang in there and if anybody has a brainstorm, please share. This kind of problem will truly be epidemic as the boomer generation continues to age. Thanks, Corey

I wish you the best and I think you need to do what you feel is right that is all we can do.

I know what you mean about trying to reconcile your heart and head. They confuse me and then I have melt downs. I feel I need to listen to my heart since listening to them all these months didnt work. I am going to be on them Monday and get Hospice out since they refuse to teach my mom to ambulate. My mom was a high functioning dementia. Drugs come into play and can worsen dementia. So can being out of familiar surroundings. I dont know how far I can spread the money but I will find a way I guess. I hate that its a second floor condo so limiting to mom......but she will be home. Its will be a bit invasive for people in and out and coming and going and 24 hr help. Another person here even when I sleep. But, I am going to give it a shot since listening to the professionals didnt do any good all these months. Medicare has run out for therapy so private pay is 244.00 a day. Way more than I make at work daily.....but the money is going out the door anyway. May as well get the one on one help. Hospice wants to do consultation with me on Wednesday, she seems nice and did talk me out of a panic attack last week while i was trying to get as much as I could done in a day. However, I think I need to focus on one thing at a time and someone repeatedly telling me mom is going to die.....I need to accept it, isnt helping. I think seeing my mom be the best she can and eat what she likes and being home and feeling safe and secure is what she needs. If she is left to sit or lay there......promoting muscle wasting away....my mom is strong willed. She has health issues but to last through the surgery, flu, pnemonia, sepsis, dehydration, Digoxin toxicity.........etc......so many hospital room visits just trying to get physical therapy. She has a strong will.......but I dont want to risk more sickness. Since the money is flying out the window and I am going to end up bankrupt and my sister only cares about every last penny spent (she is out of state and not even nice to me) I may as well take an avenue that I have not done in the past 5 months and see if mom is better at home. If only more content and she passes away more content than thats the way it is. I know she isnt going to live forever....just want to do what I can and live with as few regrets as possible. I agree....it will work out. Everything eventually does. We just come out stronger and look back later....and go wow! However.....right now I feel like I am a ship wreck trying to stay afloat. Keep in touch and let me know how assisted living search for help goes. I have a book my job sent me for free with many elder care government contact numbers and such.....websites....literally pages of them. I can hardly find time to search them out. I will check it to see if there is something in there we can look into. take care of your self too!

Thank you for sharing your experience with me; I don't feel so alone or nutty. Yes, my mother has terminal cancer and yes some dementia; but is she really so bad off she needs to be in this nursing home? I can see why she is angry and depressed. I am going to explore some assisted living options, with supervised administration of meds, and see if Hospice goes for it. But that is only if I find something we can afford. I am having a hard time reconciling my heart and head with these health care and hospice people. It WILL work out.

Try to get CNA's going to Nursing School. They are often willing to do over night and irregular shifts. They are sharp in my experience and pick up on small stuff we dont and most Skilled and hospital people dont. Little stuff like what gets them to eat. Also they are younger and have the ability to pull late or over night shifts and still function the next day, which at my age I cannot. Also they are eager and energetic which appeal to my mom. And they do not charge top dollar, like at home agencies do. Also if you are talking to at home agencies, negotiate in price. Tell them you have found cheaper prices else where. Just some thoughts. Again, this is stress for us and our parent. Have to look at all angles. Just do what you can. You do not have to stay with hospice. If medicare is not there and income is not there try medicaid and do it quick. Also, if you mom OR dad was a veteran in the service.....you can try the VA for a service called AID and Attendance. You or the caregiver can be paid directly. With dementia there will need to be a custodian for the funds. Possibly you or who ever is the care giver. But it is a help.

I accidently hit report this post, but in reality, I am going though the same thing with a Skilled Nursing Facility and Hospice and getting my mother home to my condo. Condo is second floor. Looked for contractors for a elevator (vertical platform life) with only verbal answers and not spec for condo. Two months now....I know Florida is slow but how slow shall we go? Hospice is very slow and will not give my mom therapy since she has returned from the hospital for the 5th or 5th time since fracturing her hip. This time after lectures I agreed to Hospice...now no therapy at all......not even to move from wheel chair to bed or toilet. Hospice is about comfort and not healing. My mom walked 30 feet with assistance and walker before last hospital visit and ambulated at hospital before hospice. Hospice has kept her in a wheel chair and nothing else for 2 weeks now and no ambulation or therapy. I know my mom needs to come home too. Should have done it sooner or right away. She has pressure sores from not getting up...they are trying to heal the sores.....this is a mess. I requested last night hospice to be removed and only one person called me today at work and tried to make me feel like it was wrong. I think and feel I am right. Ready to take mom to outside doc also. Meds changed this week and she was yelling last night, not normal...they seem to cover stuff up. I actually pay people to go in and see whats going on while I am at work. Mom needs to come home and get the one on one help she deserves in my situation. This has been 5 months of mess. i pray for you and I and everyone going through this. Just remember you can cancel Hospice. I hope its not as slow as it is her in SW Florida. I have expressed this my whole week. They are persistant. I dont care I know my mom. Going to move to at home help. Money and time wasted help was in the mean time. I am not good on this site yet but I send you hugs.

She's been a fall risk from the get-go. I think Hospice is being self-protective. Her dementia was really made worse by the drug regimen they had her on for the cancer (I am not blaming them)--and she ended up a little psycho and began refusing all meds which threw her into a withdrawal. She became a "head case" instead of a cancer patient, which is not their responsibility. The nursing home is owned by the same co. as the hospice and they initially refused her even for respite care, due to her being uncontrollable. The nursing home agreed to "try her" and after she was off the drug regimen, her dementia/raving improved and she is still in a pain-free stage of her cancer's advancement. This is just a phase--I can tell her abdominal area is increasing rapidly in size and she can't wear elastic waist pants, even though she weighs 109 lbs. Now her mind belongs at home but her body belongs in a nursing home or other supervised environment. Thank you for continuing to ask about this. It also helps me to put the whole picture in perspective. (I am going to take her for a day out on Thursday. We'll see how that goes. She has already asked to go by her house and I said we couldn't get up the steps.) Also, the nursing home doesn't want her back on a drug regimen prematurely... sounds like this is really between the NH and the HOSPICE. I am going to get her an appt. with her Dr. outside the facility and see what happens. How does that sound?

How would she suddenly be able to go home and walk safely? I thought you were caregiving 12 hours and paying for 12 hours before she went into NH. Has she improved so much that that would not be needed?

Thank you; she has the cancer but the bugaboo right now is the dementia. Hospice had to grab on something, so they say she is a fall risk. Her cancer is not giving her pain problems yet. But it won't be long. If we can get her up and walking again, we remove hospice's objection and she can go home. I would still get her part time care for when she needed it. Full time private care would require selling the house and we don't want to do that. We cashed in a partial life ins.policy to help in the short-term. My bro. says staying in NH best-- I say ok but IF she is able to get up and walk safely, why not go home? She lives across the street from me.

I suppose that one option is for her to stay in the NH, right? What is the downside of that?

Is she currently receiving hospice care? Is there a hospice house in your area?

Going to your home would be an option, it sounds like, if there were funds available for more than 12 hours of paid caregiving. Have you looked into all financial aid she might be entitled to? If she owns her house, would selling it allow hiring the care she needs? (And could you sell it in a reasonable timeframe in the current market? Could you rent it out?)

If she has been in/is in hospice care, I assume that her life expectancy is just months. Is that right?