Prayers for your dad and your family. I hope he can be kept as comfortable as possible.
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@NJSue did doc give a timeline at all? Our experience with squamous cell on the skin, not yet invasive, was that it grew fast but was not the type to spread. Your dad obviously has a different type. It sounds painful so I am glad he is having palliative care. This must be a shock.
Thank you @compmom. It is a tumor inside his nasal cavity and it has invaded his cheek. Surgical removal would also require removal of his one good eye and he is not willing to do that. The mass is growing fast; it was detected on a CT scan he had in late Sept. after a fall but not really followed up on. He had a syncope event a week or so ago and was taken to the hospital; they did another CT scan and found that it had grown quite a lot. He had started having headaches. He has a lot of appointments this week and we will get more information.
Keep us posted. Is he on hospice yet? I hope the pain can be controlled. Again, this must be a shock for you.
Not in hospice at this time. He is in assisted living. I also really hope that the pain can be controlled. I know we all have to die of something and he is 93, but it is just really a bummer that this is the way itâs going. Heâs very gallant and still has a great sense of humor.
Hospice provides care wherever the patient resides, including assisted living.
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Also hospice is not necessarily for the imminently dying. They serve those with life expectancy of 6 months or less, and that can be extended. My mother was on hospice three times, and she was in an assisted living facility.
Hospice provided a daily (weekday) aide, a nurse (2+ times/week), a social worker, a chaplain and a volunteer. Most here donât go to the actual hospice facility but are served where they live, even to the end. However, the hospice facility is offered for pain relief during illness or while dying, if needed.
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Thank you for the info and perspective. We will have a clearer picture of the options by the end of the week.
My dad gets his iron infusion this Friday. He is having trouble understanding why he doesnât feel well, and wants to know why he has to see GI next week if itâs an anemia problem.
Preferred sibling is doing a heroic job managing these trips â we tried and tried to have GI change the time (early morning) and they were sympathetic yet unable to do anything. Local sibling arranged for mowing/leafing and I am helping Mom with Christmas things (cards, etc) and encouraging her to take her pain meds. An unusually quiet space of time, or maybe we are all just settling in to our roles at last.
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@greenbutton iron infusions can cause nausea and even vomiting. I got in the habit of giving zofran about a half hour before the infusion, but you can also just have it on hand just in case.
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Todayâs cautionary tale for caregivers:
Dad had a followup with his PCPâs PA. She ordered bloodwork, done Friday last. Speaking on our Wednesday morning phonecall, Mom mentions they went the day before for a repeat bunch of bloodwork.
Woah, I say, why did you do that? Well, the PA ordered it twice a week for a year, Mom says. I check my Dadâs medical account, and sure enough, thatâs exactly what it says. I have waaay too much bloodwork experience to believe this is a good idea.
Confer w Preferred and Local Sib, we decide I will contact the doctor (we trying to limit the âthorn inthe sideâ to me, so the other two have clear sailing with doctors).
Doctor says âwho on earth ordered twice a week?â I reply, well, YOU did. Doctor says he will get back to us. Preferred intercepts Mom as she is headed tothe lab, thinking they need another bloodtest (âbut it says twice a weekâ)
No, they never meant twice a week, they meant twice this MONTH. No apology. I asked that they correct the instructions bc in a week, Mom will be hazy on those and go looking for what is there.
Good grief. itâs always something. Keep checking caregivers!!! Keep checking!
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My cautionary tale for those with parents with long term care insurance. Make sure you get the waiver of premium starting when they get services - they should not be paying a premium any longer once they start receiving services under the policy. Getting that refund has been like pulling freaking teeth while claims says itâs customer service and customer service says itâs claims. The way they are acting I suspect very very few people ever get that refund âŠ
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I had to file to sue for bad faith before my momâs LTC adjuster got around to paying out.
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Iâm back from the travels to NC with 94+ Dad and his 91 yo wife. The info provided here on the airport wheelchairs was spot on. The frustration was when they decided to get out of the wheelchairs before they needed to.
Dad is in decent shape but his vision has been bad for years. He is also sleeping a lot, like 9PM to 10:30 AM. Heâs in remission for a bone marrow cancer.
His wife is more frail and she complains about her husband (our dad) when she has a private moment with me or one of my siblings. (Iâm over it!) She should be using a walker at all times. She says she uses it at home to walk down the driveway to the mailbox. Sheâs always been a bit daffy so itâs hard to tell if her mental state is shifting.
They live in a two story house (but they shouldnât) and he wonât turn over the reins of the apartment rental business heâs been running since the 1960s. He expects her to drive him around.
We siblings have had three zooms this week trying to strategize on how to talk to him/them about hiring a (real-estate-licensed) property manager.
We have a zoom planned for next week â to tell them both (at the same time!) we are concerned and it is time to make some changes.
We are exhausted by time spent with them (and the crazy conversations) and we live in fear of a tsunami over the horizon, with the idea of taking care of them to the end, and the likely legal/financial mess we may face.
They canât/shouldnât drive.
One canât see much.
The other resents the business (that was built with the first wife).
They married in 1999. She dropped LTC in 2003 (I think it was a condition of their pre/post-nap). It was a great policy through a pharmaceutical company.
He hasnât done a good job of maintaining the properties in 30 years. The tenants are problematic and have physically threatened one or both of them.
Who has had to convince a parent (in their 90s) that itâs time to step back from work?
Iâm already exhausted.
What is the plan for the property once one/both pass? Does the 91 YO wife have any children/grandchildren involved or in the area? He canât drive and she shouldnât drive â how is that stopping? The tenants are probably problematic because of the situation - a vulnerable owner and property that is not being well maintained.
My parents owned 3 well built apartments buildings (dad and my motherâs dad were both contractors with a complete construction and cabinet shop). Two buildings were built new while another was remodeling a large 2 story building into a 5 unit apartment building. Dad phased out when he was retiring - first selling the buildings with the construction company (after he lined up jobs for his employees). The fellow that bought the construction company buildings later purchased the 5 unit apartment building which shared a large parking lot. A brother lived in town and helped with the two apartment buildings while mom was alive, and even had garages built and the flexibility with condo conversion (there were 2 townhouses that had double car garages, but all the other units got garages built with the idea that we might be selling as condos). There happened to be another fellow who owned apartments, and he ended up purchasing these apartment buildings when we went to sell right after mom passed.
I imagine both dad and his wife are getting a bit crabby with trying to hang on to more than they should (2 story house, apartments/rental business) and dealing with a shrinking life.
The LTC insurance - you essentially âself insuredâ for 20 years, and honestly the policy may not have ever really paid off â and it takes someone sometimes being on top of the insurance company to get the actual benefits. As RMGC said with filing to sue for bad faith. I had disability insurance, and they didnât want to pay out either for my claim until I had to say âwell I guess I need to call our lawyerâ - they called me the next day and then paid on the policy (I had aggressive stage III cancer, and the chemo was absolutely debilitating, with Medical Oncologistâs office having a person specifically handling the forms â the insurance companyâs MD âdisagreedâ and I told the claims handler their MD was not a board certified Medical Oncologist, and who has never examined me nor seen all my medical records.
Good luck with getting a quick phase out of things on the business side. The emotional attachments and routineâŠand âadmittingâ the shrinking life when they move from the house.
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My dad (93) is in the sleeping-most-of-the-time phase. He was that way before his diagnosis. The body just wears out. My mom died very unexpectedly and too early at 71 of septicemia (result of a kidney stone). She was fine and doing water aerobics on Monday and she died on Friday a.m. I grieve her every day but I think my dad has suffered so much since Dec. 2019 (he had a bad fall then and broke his backâhe has bad osteopenia) that itâs been nothing but pain and adjusting to loss of function. He is a prisoner of his own failing body and at least my mom didnât have to endure that for years. I have changed my thinking about longevity. I donât care about living into my nineties. I think it can be a curse.
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This might be company-specific. My parents were with Thrivent and I didnât even know about the premium waiver. Their rep mentioned it to me. All in all, I was pretty impressed with Thriventâs handling of the case.
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Thanks all.
The LTC was through Upjohn and I think the cost was reasonable with respect to the possible benefit. If my father pre-deceases her, I donât know what assets she has (based on their pre-nup). Perhaps the house they live in. The rest of the assets are his estate, separate from hers. Iâve read his will and my motherâs trust, but I havenât read the pre-nup.
I appreciate the info on the waiver of premium for my own purposes. DH and I have the Federal LTC plan. We have been paying (very reasonable) premiums for more than 20 years now. (We wanted to get it while we could before we needed to have physicals!)
Dadâs sleeping is jarring. Itâs just so out of character for him, but it doesnât seem to bother him. He says itâs because he gets up at night for the bathroom, but 14 hours of sleep seems excessive for a couple of bathroom visits. Still, I get that his body needs it now.
I also donât want to be 90. I donât want to be a drag on the family. I donât want to be in a non-functioning body.
After 2 Zooms and one conference call, my siblings and I are emailing topic lists for our planned zoom. I think it is best that I keep my mouth shut, except to support the idea of safety, and if the conversation allows, to discuss my call with the licensed property manager.
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@NJSue what a horrific story about your mother. Does your Dad get up at all? I started to use the term ârechargingâ for time in bed (I told my mother it was like her phone battery) and that put a more positive spin on what was, in reality, just more time in bed.
I fell and broke T12 and last year broke 4 more. The pain has eased but a certain level of disability persists, especially lifting. For a 93 year old, it must be so much worse. I found that staying in bed made things worse, but he probably has no choice.
Itâs so hard to watch them failing. I think 85 may be a good number.
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My Dad also spent an unusual-for-him amount of time sleeping, and it turned out to be severe anemia (coupled with not eating enough)
Siblings and I have not found an effective way to halt behaviors we worry about, but have found that approaching from a âwhat are your priorities going forward, here are oursâ makes for a better discussion. My parentsâ priorities are to stay in their home, so we responded with âokay, these are the services youâll need us to help set upâ. When they fuss about cost (my parents have more money than theyâll ever need) we remind them of their priorities.
If your fatherâs goal is to maintain ownership of the properties, that is different than maintaining personal control of the management of all of them.Maybe he can be persuaded by reframing what control means. Good luck, they can be impossible to move. I highly recommend Atul Gatawandeâs Being Mortal to everyone.
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