Elderly parents won’t consider hospice involvement. How can I help them understand it’s only going to get worse going forward without it?
My father has been bed-bound since 2017—slid to the floor one day and never stood up/walked again. Testing showed no broken bones/fractures and MRIs didn’t reveal anything new evolving.
He has been cared for at home primarily by me, with minimal assistance from my mother who’s a multiple stroke survivor and has COPD, full time for the last 7-years. I won’t even go down the road of talking about aides in the home as that’s either been hit-and-miss or a downright disaster. I have one brother but he’s either too busy/sick or whatever the excuse of the day, month or year turns out to be.
Background: Dad’s long history of medical issues began in 2000: two heart-attacks (one of which was silent) with the resulting CHF diagnosis, BP/cholesterol (controlled with meds), Parkinson’s-like symptoms, COPD, chronic kidney disease from lifelong recurring stone formations (he’s had 5 lithotripsy just since 2014), an enlarged prostate with urinary incontinence and two strokes (one in 2008 and another massive one 2014, each affected different hemispheres with the last involving his occipital region). He was also diagnosed with hypothyroidism in late 2019. Most of his ailments were linked to Agent Orange exposure in Vietnam (my dad is a 28-year military service veteran).
From Nov 2020 to early Jan 2021 he spent 62-days in the hospital with me there 24/7. Initially diagnosed with a bladder infection (his second occurrence since Sep 2020). Imagery revealed a stone was lodged in a pocket that had formed. He then underwent a diverticulectomy and a suprapubic catheter and Foley were inserted. Operation went well but he lost 5 units of blood during post-op. That’s when things went downhill fast—developed pneumonia and dysphasia and after 10-days of not eating/drinking more than a nibble and sip here and there the doctors came in and said verbatim, “he’s starving to death and we need to put a PEG in.” At this point my dad was barely lucid—I’m not sure how far behind him I was quite frankly. So I made the tough decision to move forward based upon my mother’s encouragement—we’re both his POAs.
On the heels of this procedure and while he was recovering, my mom suffered a stroke. She had called me as I was leaving the hospital to go to their house to check on her and I realized from the sound of her voice what had happened. The next 10 days were spent going from her room on the 9th floor of the hospital to his room on the 6th. No one ever suggested hospice for either of them—not one doctor, nurse or social worker. I asked for them to be evaluated on my own and neither was deemed eligible by the hospital.
So both parents came back home on the same day with skilled nursing, PT, OT and ST ordered. Although I was given the option of SNF placement, I simply couldn’t do it. My parents would’ve been miserable there, separated from one another yet again and sequestered in quarantine for 14-days, which I felt was only going to exacerbate things for them mentally. (My dad turns 84 this year, my mom will be 82; they’ve been married for 62 years.) Things were going so-so for about 1-1/2 months until suddenly my mom couldn’t breathe—despite being on continuous oxygen, nebulizer treatments, etc and she was rushed back to the hospital with a heartbeat of 220, lips turning blue as she collapsed in her wheelchair. Diagnosed with severe C02 buildup/transient Afib. A week later my dad started acting “off-kilter” and then he went back to the hospital for a UTI with delirium and acute kidney failure. This time dad went to a SNF—I was buying myself time b/c I knew he’d fail therapy but I needed to focus on her. Mom came home with a Trilogy vent which she refuses to comply with and now dad’s got another UTI in the SNF.
My problem is I can’t get either of them to see that this is/will be a continuous loop of Hosp/home/rehab. My dad’s PCP is ready to sign off on hospice but how to get him or her to accept this is “reality? I’m starting to spin into a numbing mind/body pit.
Obviously the current caregiving arrangement isn't working and is beyond what you can manage. Just because they want something a certain way doesn't mean you have to comply if it is at great cost to yourself. This is an unethical (and immoral, IMO) trade-off.
It is hard to know if his resistance is from denial or cognitive impairment. If I were in your situation I would give him a choice: he either accepts hospice or you will need to resign your PoA for health reasons, then if your mom isn't managing things well (which you know she won't) you will report them to APS and they will become wards of the county and the county will dictate their care. This doesn't have to be a confrontational discussion, just an honest one bourn out of your exhaustion. He makes the choice and either way you are protected. If your PoA allows you to make a decision without your mother's agreement (or if she herself is cognitively impaired) then I would move ahead with hospice. You do not need to tell him what's coming, you can tell him any "therapeutic fib" that will keep him calm. Yours is not an easy situation, you're not imagining it or overreacting. Others on this forum will have more suggestions for you. I wish you much wisdom and peace in your heart.
I am not a nurse, Alva is and will correct me if I am wrong. With CHF after a point no matter how much oxygen is given, it just does not get absorbed into the system. The lungs can no longer do their job. Hemoglobin no longer can carry the oxygen thru the body. There's more carbon monoxide in the system than oxygen.
Unfortunately the VA isn’t an option and hasn’t been since Mar 2020 (COVID). It’s a Dept of VA nationwide mandate that no new patients can be assigned to CLCs (community living centers) which are VA run nursing homes. The only other options are is to send him to a: (1’ ,State run VA home but that’s hours away from us or (2.) civilian contracted facility which is also far away. Even if this were an option, my mother wouldn’t be placed in the same facility as she has no entitlement to that benefit.
My parents were wonderful to me and gave me every advantage they could. That doesn’t mean they’re Saints but neither am I., I do believe they always thought it would be something quick that took them. How they’ve survived all they’ve been through medically comes from sheer tenacity to not want to leave one another.
Have you made any progress convincing your parents?
Thinking of you.
My dad was being discharged from the SNF this Wed, since he failed to progress, but I paid for him to stay another week. I’m opting for weekly extensions so I can try and get the Veterans Administration involved. I’ve been on the phone with them non-stop and it’s a bureaucratic nightmare trying to get a straight answer. I’m reaching out to their Patient Advocate this morning to see if I can make any headway on placement. If not, I’m overriding my mother and will bring in Hospice for him.
Thank you for checking in on me and my situation.
Strokes often result in Vascular dementia.
Dementia is a condition in which executive functioning is diminished. The ability to see the consequences of actions, to plan, to weigh the good and the bad-- is absent or impaired.
I understand that folks want to "die at home".
Do you think that your parents, in their right minds, would want YOU suffering the way you are now?
One of my cousins moved heaven and earth to keep her mom and dad at home, because "they'd be miserable in a facility". When her mom died, it became clear that my uncle's care was beyond what could be accomplished at home. He was moved to Memory Care and then eventually to a VA nursing home.
You know what? He was as happy as a clam. Good food, better medication management, on-site access tp psychiatry; it was a win-win.
I think you need to stop torturing yourself with trying to accomplish what your parents think they want and get them what they need.
It doesn't sound like reasoning with them about their health issues is doing any good. In a not so subtle way, you could turn the tables on them by telling them what effect their stubbornness has on you. How important is your health? If this sounds like laying a guilt trip on them, maybe so, and if your affronted, I apologize. I know it's nothing you would ever do, but the situation is unsustainable and can wear you down much more than “spinning into a numbing mind/body pit.”
I realize you're not looking for sympathy, but your situation is, nevertheless, heartbreaking. There are just too many medical issues going on here. There are some last wishes of our LOs, or promises made, that we as caregivers just can't keep.
I'm pleased to hear that posting your story was cathartic for you. Many others don't realize the therapeutic value writing out their story has.
I wish you luck and success in achieving the appropriate care in the appropriate place for your parents.
The word Hospice seems to frighten so many people. The thought of some and I have read comments here even, that Hospice came in and started them on morphine ...or Hospice came and they were dead in a week....Hospice kills people...
It truly is sad that so many people do not get the chance to take advantage of all that Hospice can provide. The care is amazing, the supplies and support are outstanding.
Another option might be to try to get them to agree to Hospice for a specific amount of time, 4 weeks for example. If they are not pleased they can discontinue Hospice and either go to Palliative Care of return to their previous doctors.
But I do appreciate your thoughts of a ‘trial run’ with an agency theme, keeping them focused on if they don’t like the services they can switch back.
I find it sad to watch the two most mentally agile and dynamic personalities I’ve ever known having to face this. They’ve always been hard-working, take charge of their own destiny type people who are being reduced to a “world” around and within them that they no longer recognize.
What about speaking to a social worker to and have them explain how hospice works to your parents?
Hospice isn’t a death sentence. It is comfort care.
Hospice has the most compassionate staff available in healthcare.
A friend has in-laws who wish to die at home peacefully. They are living at home alone & cope together (just). Have each been in a non-stop cycle of falls/crises-EMS-hospital-rehab for 2-3 years now. Cannot cope alone so one gets bounced into respite care whenever the other is away.
No dementia dx, but clear that reason & insight are diminished.
The family actually tried so hard to get them into a safer living environment & it took them a long while to cotton on to what the primary Doctor told them: "they want to die at home".
This is very very different to your situation but I thought of it because that couple have refused Hospice also. So they want to die at home but also want family to rescue them from every medical issue 24/7. They cannot reason they want the opposite of what they want.
As you cannot reason with unreasonable people, that family have taken the stance of not arguing any further or pushing any curative treatments. Taking a comfort care approach instead when a choice can be made. Eg surgery or treatment if it reduced pain, meds for UTI & other infections but no CPR & no kidney dialysis.
Not withdrawing life saving treatment but not especially adding any either. Does any of that sit with where you are?