My MIL worries about running out of money. That would be extremely unlikely, given her age and financial situation. But she worries, just the same. Her LTC payments, which cover her AL costs, run out when she’s 102 … and she has more than enough in the bank to pay for any additional care she may need. I think it’s sad that she worries.
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Good article on Hospice
https://www.npr.org/2023/12/28/1221648271/hospice-care-myths-jimmy-carter-end-of-life
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Yesterday morning, Dad’s heart rate was irregular and very slow (in the 30s). They decided to install a pacemaker in the afternoon. They had planned to do that in 2019, but the surgeon canceled the procedure at the last minute and we never got a satisfactory explanation for the decision. Dad has been in A fib a lot since then. So I guess better late than never! It’s not a major procedure - full anesthesia isn’t even required. I hope this improves his quality of life.
DH and I had a good phone call with him. He’s as optimistic as ever. He is truly the most positive person I have ever known. He keeps trucking!
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Hey that’s good news! I think our engineering Dads would get along well. Mine knew Norman Vincent Peale and was highly influenced by his “Power of Positive Thinking” books and sermons.
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Positivity helps. But sometimes stuff happens. Dad fell and had hip fracture last week (sis is there now while my Boston kiddo is visiting here). He had the fastest bounce back the surgeon had seen for a 96 year old. But it sounds like it could be a very long time before he gets back home. His house is not easy, but his wife has some good ideas for setup on the main floor…. with some hired aids to help.
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It’s funny you mention that book. My mom was worried about me when I was a teenager because I was anxious and negative. She gave me the book! I couldn’t tell you a thing in it, but I was just so touched by her giving it to me that I resolved to be more positive. I think I’ve done OK, in general. 
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Sorry to hear about your dad. But that’s pretty amazing for 96!!
Obviously, Dad’s luck won’t hold out forever, but it’s been impressive so far. He got chronic leukemia about 11 years ago but is in complete remission. I really think he has 9 lives.
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@kiddie I think this is one of the biggest myths about hospice (from the article linked)
While hospice care doesn’t treat an illness, it manages pain and other symptoms, focusing on the comfort, dignity and quality of life of the person who’s dying.
You can indeed treat illness that is not part of the diagnosis that you are on hospice for. So if dementia is your hospice diagnosis, you can treat pneumonia or heart or anything else that comes up. In addition, if you want, say, a CT scan that hospice Medicare doesn’t cover, you can go off hospice and then go back on.
Hospice Medicare and regular Medicare can coexist. Regular Medicare will still pay for meds not related to your hospice diagnosis. At least where we are.
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CLL? That’s what H was diagnosed with this summer. With CLL, there is no remission. You may be symptom free for the rest of your life, but it’s always there and progressively gets worse. You only treat it when the symptoms become worse than the treatments.
Since the average age of diagnosis is about 70, most people die from something else. H getting diagnosed at 55 is more worrisome, though the doctor at the cancer place says that they really don’t have a good life expectancy number for people his age since there aren’t as many.
Hs dad was diagnosed with it around age 70 or so. He is now almost 89. He has a host of other problems but I don’t think are related to that yet. They attributed his to being at camp lejeune though. At least before H was diagnosed. Now they say it may just be a coincidence or it could possibly be genetic
It’s CML.
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@deb922, are your H and his brother going to actually handle the crisis when it comes, our are they going to expect YOU to manage things and get the ILs moved?
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No, I am sure that when things happens, my husband and his brother will handle any crisis.
Both are pretty good at these things.
My bil is very connected in his town and will be able to navigate.
When we moved my mom to independent living, my husband was very helpful.
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@ClassicMom98 @MaineLonghorn
I have CML also. (ML, I’d forgotten your dad had it!) I’m 21.5 years into it, and was dx’d at age 41. Very young for CML, but a friend of my sister’s was dx’d at age 26. My sister connected us tochat, since I was about eight years in at that time, and we both had young kids. I have no family history. I’m on Sprycel, which is my 4th med since starting this journey. Side effects are the most tolerable of the drugs I’ve taken; have been on this since Aug. 2012.
One of the meds threw me into full cardiac arrest, two weeks after I hit my 10-year CML anniversary, and I’m only here thanks to my son who did CPR. ML, I have a defibrillator, too, as a result of the heart attack. The battery lasts ten years. Procedure isn’t bad, bruising can be extensive if your dad is on blood thinners, takes about three weeks for the arm to get back to full range of motion. I go in twice a year for the cardiac nurse to check it, and the other two times they do it remotely. Since your dad has Afib, they will likely be checking and adjusting his ICD frequently to smooth out things. It’s not painful or startling – I can barely tell when they are challenging my heart rate to try to induce an episode.
The docs researching CML don’t think there’s a genetic link. My onc feels I’ll be around til something else knocks me out. That was absolutely not the case 25 years ago, pre-Gleevec. I was told 3-5 years back then unless I responded to Interferon, and JHU didn’t offer Gleevec as a first-line drug in 2002.
I’m still undetectable by PCR, but we’ve tried going treatment-free after 4.5 years of undetectable, and it comes roaring back in a month. We now know I will never be able to go off the meds.
Classicmom, It’s hard to be a caregiver. Sending you lots of hugs and strength. My H, for all his faults, has been an absolute rock with my health issues. Take care of yourself, too. There are new meds out for CLL, which is a big step forward. I know several people through my leukemia groups who have it, and most were under 60 at dx and doing well. The success rate of new meds is changing things so quickly that the “odds” docs have are often based on now-old treatment plans.
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Thanks for sharing! Dad hasn’t been on any medication for awhile now. Keeping our fingers crossed!
I’m glad you’re still around, wow. I’m thankful we live in the 2st century.
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ML, your dad is one of the lucky ones! About half the folks with CML who get to major molecular response and hold it for two years (they never call it remission) can go off meds. The good news is that people who have to go back on generally get back into MMR again.
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Thanks for the explanation!
I just want to say there are no stupid thoughts , especially amongst all of us.
Hospice. In the history of caregiving, I think virtually nobody has said “gosh, I wish we had waited longer”. Also, palliative care is sometimes different than actual hospice. Also, having a consult is a few steps from starting either of those, and information is power. Also, if you were tochoose hospice, you are free to un-choose when or if it is appropriate. My mom had those exact worries about dad but hospice was such a blessing.
Hospice also provides support for the caregivers. Don’t neglect to think of the choice as a good fit for all of you, not just the patient. I’m so sorry this is happening. hang in there
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My dad’s pacemaker installation went well and he’s back home. His lady friend lives in another facility owned by the same company, and they’re allowing her to stay in the guest suite at Dad’s facility at no cost so she can take care of him. I’m happy that my sister has her help.
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SIL has been concerned about MIL the past couple days, telling H that her behavior seems to be inching toward dementia. This morning, she told H that their mom didn’t recognize her. I immediately told H to ask her if they were testing her for a UTI. Yup, that was it. It’s amazing how a UTI can affect cognition.
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What’s a good website to help understand what home care services might potentially be in scope for Medicare coverage?