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LuckyLinda Asked September 2015

My Dad wants to die but doesn't have a life-threatening diagnosis. How can I determine if Hospice is right for him?

Both parents alive, Mom is 85, Dad is 87. They live alone in a single family home. Dad's health is bad requiring 24/7 care. Severe stroke, paralyzed on right side, and memory probs but NO diagnosis of Alzheimers (he knows all of us, our names etc) He can't walk anymore....not without a lot of assistance. Mom is in denial about his condition. Dad says he wants to die. Severe diabetes requiring insulin, difficulty eating, swallowing, following conversations, severe mood swings, tried to kill himself by taking a bunch of Aleve pills (the only pills he could find) but couldn't manipulate the pills well enough to take them, spilled all over the floor instead. Is definitely suffering due to not possessing all his faculties or being able to walk etc. Mom doesnt want to do Nursing Home (altho that is the obvious need here) because she 'cant live without him' and he doesn't want to leave home. Money for a fulltime nurse is becoming impossible. Am thinking about hospice care instead...especially since HE has expressed a desire to die. But NO firm diagnosis of a death sentence in 6 months or whatever form a doctor. SOME Alzheimers symptoms but definitely not all. He is emotionally abusive and has the maturity of a 4-year-old. I don't know what to do. Mom is struggling, trying to care for him with help from a nurse several x a week and friends and family, but it's becoming too much. Falls are common; and Mom's balance isn't great either so they have BOTH fallen! Bottom line: Dad needs 24/7 care IN HIS OWN HOME. I know hospice could give that to him but Mom won't admit he is at that point yet.
I need more info on hospice and the conditions/diseases which qualify. Assisted living will NOT take Dad....too many medical issues. Nursing home is probably best but they will not separate and Dad wants to die at home.
HELP!

EXPERT Carol Bradley Bursack, CDSGF Sep 2015
Your local hospice provider will be able to offer guidance.. With all of your dad's issues, I doubt that he can live long. It's amazing, especially with his diabetes in the mix, that he's made it this far.

If hospice can't provide care, they can likely guide you as far as other local resources go until the time that they can take over. Be aware that hospice can't have someone sitting with your dad 24/7 if he is at home, but they'll be able to offer many additional services.Try contacting them and then updating us. We'd really like to know how you're doing.
Carol

magicstone Sep 2015
the hardest part, is for the living to just let go of the dying.. being dragged around to doctors for years and years is the deperessing thing... loving them is letting nature do her thing

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Nancy50131 Sep 2015
I cannot say enough good about hospice. My husband was put on hospice in March when the rehab labeled him "failure to survive". He is in about the same condition as your father, paralyzed by a stroke on one side, knowing all of us but usually not in this "decade". I also did not want him in a nursing home. He is 81 and I will be 81 next month. Hospice comes each day and bathes him and changes the diaper. I have a nurse, social worker and aides that are so much help and encouragement. Love them all. I understand your mother's hesitance about the nursing home. I went to a few and couldn't get out fast enough. He is definitely dying now. He no longer eats, I think his kidneys are failing, but I feel that hospice has prepared me to live without him. They have given me respite time when they have him for five days. I am the 24/7 care though I have a lot of help from my family. God bless them and the hospice workers. By the way, if he lives to October 4, we shall be married for 63 years. If not, I know he will be out of pain. God bless you and your family in your decision that only you can make.

LadeeC Sep 2015
My dad finally passed last night, after two months of hospice, when it was expected he'd only make it a few weeks (no real need for condolences, here .. I *need* to talk about this for myself, therapeutically). Prior to that we had Home Health Care visiting nurses and aides. He also had "failure to thrive" except: Medicare no longer accepts that as a diagnosis (probably due to overuse) ... BUT ... hospice worked very hard and used a combination of underlying diagnoses to get him admitted.

His decline was really rapid once he stopped eating more than a few hundred calories a day and drinking about 8 oz a day. We chose to honor his choice(s), but he was also very stubborn and despite being physically unable to stand (let alone walk), he'd literally forget it, and ended up falling a number of times. So coping with his in home care was a real challenge (especially considering that my sister, his primary CG is unable to lift anything heavier than a cantaloupe).

Depending on your local organizations, the care available through any of the home care agencies will vary and depend upon whether or not the patient is eligible for Medicare or Medicaid and any health insurance he may have. Don't be afraid to interview them and find out the services they provide ... and do some due diligence by seeking reviews. All state and federally funded (meaning almost all) facilities are subject to state and federal reviews and their ratings, complaints and responses are available online, as are home health care agencies. https://www.Medicare.gov

A couple of other things to consider:
= The others have suggested treatment for depression, and I strongly agree. It's totally worth following up. If your dad is incontinent, often depression and confusion can be attributed to a UTI. Ask if his primary care physician will order a test.
= If both your parents are no longer competent to determine their own best interests, it's possible to gain guardianship. This is NOT an optimal choice .. it's long and legal (usually painful), but it may be your best choice.
= Long term care is NOT covered by Medicare or Hospice, at all, although there are some hospice facilities. Long term care is paid by insurance programs or are out of pocket, unless and until you can qualify for Medicaid (state level medical expenses) .. in which case any assets will have to be "spent down" to cover the costs.

Hope this helps. Please let us know how it goes for you.
LadeeC

BarbBrooklyn Sep 2015
Have you considered having him see a geriatric psychiatrist to deal with his depression? Was he taken to the ER after his suicide attempt?

Has he had extensive cognitive testing to determine the extent of his cognitive problems?

Have you called a local Hospice organization to find out about their evaluation procedure?

You are not in this alone! Please post back soon ao we can give support.

Eyerishlass Sep 2015
Give a local hospice provider a call and have them come out to the house to do an assessment. Your mom may have to make some sacrifices if she wants them to stay in their own home. If they continue to fall and someone gets injured the choice could be made for her and I'm sure she doesn't want that.

Jimineze Sep 2015
Hi,
I'm so sorry to hear about this problem. My Dad is bedridden 24/7 because of loss of muscle mass and is almost 99. He takes meds for a fib and that's it. He is still very much lucid. He lived alone but everyone had to talk him into coming to live with me. Hospice stepped in and stretched a dx to get them on his care which was a blessing, however, I basically do all the work. What has been said is correct.

Someone comes to clean him up everyday, and a nurse comes once a week.
My Dad does not have nearly the problems yours does, and we still got hospice. Like others have said check with several local ones. They really worked hard for me to get him on, but in reality I still do all the work.
God Bless you and yours.

LadeeC Sep 2015
Llama .. ok, feel free. And .. there wasn't a snowballs chance in hades that MY dad would go to a psychiatrist. Not at 87 and not when he wasn't forthcoming with his own PCP.

Sunnygirl1 Sep 2015
It sounds quite serious. Does your dad's doctor know the situation and symptoms? Something is causing both of them to not recognize the danger of their situation. I would share that with their doctor. They may not be able to make safe decisions anymore. They may need help to protect them.

I don't think that just wanting to die is a basis for Hospice. I suspect the doctor will have him evaluated and treat him accordingly. The doctor can determine if he may be appropriate for Hospice. I had read that when a Hospice patient is in the home, they require family members to also share in the care. So, it may not be as much support as you are expecting. Or you might check out a Hospice Center, where the patient resides. All their care is provided there.

Their doctor may help with an assessment to see what type of help they need. Even with in home help, they may need more. If they can stay in the home, you might check with PACE. It's a Medicare program for in home care.

http://www.state.nj.us/humanservices/doas/services/pace/

If they need a nursing home, I would discuss the process of getting the paperwork from the doctor.

jeannegibbs Sep 2015
My husband had hospice care in our home. A nurse came for an hour or so a couple times a week. We could have also had a volunteer come in for a few hours a week, but since I already had a PCA helping I said they should use their volunteers with someone who needs it more. A social worker checked in a couple of times in the 5 week period. Hospice was absolutely awesome, but they did not provide 24-hour care, and they did not lessen my work load or replace the PCA. They helped remove red tape in getting what my husband needed, immediately. They reduced my stress level and helped me help my husband stay comfortable.

If hospice in your area is anything like my experience, it is a great thing to consider when the time comes, but it will not solve the basic problem you worry about.

PACE is worth looking into, if it is available in your area.

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