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

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.

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.

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.

How long ago was the stroke?

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.

In home Medicare hospice care is not 24/7 care. They will send different medical staff several times a week to assist with bathing, medications and other things. Many people on hospice care continue it for years. It does not have to be six months and some people are in and out of hospice care. I wonder if you mom could also use the help of a therapist. She feels a dedication to your dad. Many caregivers pass away before the person they are caring for because their health declines under the stress of providing 24/7 care. If your mom passes first, then what? Dad, no doubt, would have to enter a nursing home. Have you started to research what is available in your area? This may be a good exercise to complete as maybe your mom would see what excellent, loving care your dad would receive. Many nursing homes are private pay for a period of time before a patient can apply for Medicaid. Will there come a time when they will run out of resources and need to be on Medicaid? If so, have they consulted with an attorney with expertise in Medicaid planning?

And what about your Mom? When the time comes will there be resources to pay for her care? Medicaid has policies about spousal impoverishment so that one spouse does not have to become penniless while the other becomes quite ill needing 24/7 care. Do both parents have the legal paperwork done? POA's, DNR's, medical directives etc?

LuckyLinds, I hope you come back to update us on dad's progress. In re-reading your post, I'm wondering if your dad had rehab after his stroke. In particular, his swallow problem should be evaluated by a speech/language pathologist. Much improvement can be made in that area with therapy, often.

Also, some strokes cause vascular dementia. Not Alzheimers but still dementia. Not so much loss of memory of who people are, but short term memory loss and loss of reasoning ability, the order in which things should be done. A good geriatrics health care provider would be a real boon in this situation.

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

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.

Jimineze, thanks for offering your similar experience as a guide for LuckyLinda. It's gratifying to see all of these comments that come from the heart. We are with you, Lucky Linda. Take care,
Carol

First of all, you do not make the determination of hospice. Only a doctor can order those services if the determination has been made he has about six months to live. That said, you do not say who has POA, or MPOA. If your mother has, and she has said they will not be separated, then nothing can be done about that decision. At some point in time you need to step back and let the chips fall where they may as all your energies are being wasted on decisions you cannot make. Not everyone can solve this problem because your parents have already made their decisions. It is hard to witness their decline, but let them have their time together.

Hospice is different in every community in the services they provide, staffing and how your local Hospice is organized. You need to contact your local Hospice to get more details about how they operate. For instance, in my area there is no hospice-at home 24/7 care. However, they do provide 24/7 care at our local hospital as an inpatient. Your local hospice may also be able to guide you to other assistance to possibly fill-in the gaps of needed help in the home.. Some communities also have a network of home care organizations which could be helpful. Seek out any elder care organization which may serve your area. Usually these groups or networks will explain whether or not Medicare or Medicaid covers their services.

LuckyLinda...you probably have entered the 'caregiver guilt zone' where you need to consider the ignore & lie approach. Ignore what they say they want and lie about what & why you make/made decisions for them, which may not be what they want but are in their best interests...in order to keep the peace and do what is best for comfort, convenience and $$ for your dad, mom and you. (considering, I would assume, there is no POA or living will or health care directives..and it's too late for that now.) You've been following their wishes but it is already too much for you and your parents to handle and will only become more overwhelming.

I wish you and your parents...peace.

Hospice does not provide 24/7 care but is definitely a support system that your father can use. Speak with your father's physician and ask for a hospice referral. Hospice will then evaluate your father to determine if he is eligible for their services. Some assisted livings will accept your parents especially if he is receiving hospice care. You may want to consider hiring a Aging Life Care professional to help you navigate this situation. Best wishes in this difficult situation.

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.

Hospice has to be on a recommendation from a doctor. Then they would come out and evaluate him. I just this weekend got Hospice for my husband who is about 5 years into Alzheimer's (but he recognizes everyone too so that is not necessarily a symptom for everyone.) But unless he is in his final stages, Hospice does not come out 24/7.
I didn't think my husband would qualify either but like Jimineze said, the caseworker who came out did everything he could to get him to qualify. In my case, they will bathe him 3 days a week and I believe the nurse comes every 14 days. But they did provide a very nice bed, transporter wheelchair and supplies. I am just grateful at having a phone number that I know I can call at any time if I am having a problem. And I know the option is always there if I am unable to care for him that he can go into a Hospice facility at the end if needed.
I like the response Ferris gave you in that you may have to "step back and let the chips fall" if they are determined make their own decisions. Tough on you, I am sure. You may want to see a therapist yourself to help you through these times!

I meant in my answer...."failure to thrive".....not "survive"...thanks for the heads up on my error. He was reevaluated after six months and now has two more months which they feel he will not "survive". He is a very large and strong man with a strong heart. But it appears that kidney failure will take him.

Get him to a psychiatrist, who can give him an RX for depression meds and a psychologist, who will talk to him. THIS IS SERIOUS! I WOULD HAVE HIM ON A SUICIDE WATCH SINCE HE ALREADY ATTEMPTED IT ONCE.

Hospice is end of life care. It is not for someone who wants to check out of life early.

Thank you llamalover for stating that. Also everyone needs to be aware that terminally ill patients enrolled in Hospice live approx 30 days longer than those who are not. Maybe your dad is bored and uncomfortable? If he feels better maybe he'll want to engage more. I hope you all get some help and some peace in your lives, whatever paths they take.

He has a lot wrong with him, and hospice may or may not be appropriate. What isn't appropriate is not treating the depression, though. The pain of depression is greater than the pain of a physical ailment and sucks any pleasure out of life that he might still be able to have. He might have vascular dementia or Parkinsonism that could also be treated medically. If you have any option to get him to a comprehensive geriatric evaluation or at least a good geriatric neurologist and psychiatrist they could possibly find ways to help. A home PT or OT evaluation could look for ways to prevent falls. If that is just not going to work either, it is possibly time to try to find a facility where they could be together. There are some SNFs that look a lot like ALFs and even some that house different levels of care under one roof. Sometimes there are price breaks for spouses in this situation, with one paying for the higher level of care that they need. Are there any Medicaid waiver programs that could give you more aide help? Are you the alternate POA in case Mom becomes unable?

You're welcome mmills.

vstefans: Thank you for restating the URGENCY of him getting to the psychiatrist!

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

If hospice will accept your dad and you transfer the focus in care to palliative it will sometime relieve depression. Ask his doctor if he will write the order. Have hospice come and evaluate. You can always change your mind. But don't expect too much from hospice as others have already stated. Your dad will be comfortable. Your mom will be comforted that they don't have to separate just yet. It appears a NH is a larger threat to both than death.

Do get your Father's depression checked out, but also know that there are times
when a person is coming to the end of their life and they just want to be allowed to go.
Death is terribly hard for the living, but a peaceful and dignified death is also the last gift we can give our loved ones.
Before I'm jumped on, I'm not advocating Euthanasia. We can give our loved ones permission to let go, remind them we love them, and will miss them like crazy But if they are ready then go, in peace with love.

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

Magic: I totally disagree. You go to ONE GOOD PSYCHIATRIST.

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.

Ladee, sorry for your loss! I agree both with getting treatment for depression, and for acknowledging stubbornness in living life "my way" and being ready to let go when the time is right...there are times when it is not depression but normal sadness and unwillingness to make changes that would be too hard...there are times when grief is normal and people have to decide for themselves what they can and can't accept in life choices, as well as times when health and strength are just gone and not coming back. Not always easy to tell the difference...

Magic: Too bad!