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!
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
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.
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!
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.
Carol
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.
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
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.
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?
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.