My dad is an outlier in so many respects. 
I forget how many months he was on hospice and then got off.
More drama with the caregivers sharing information with each other, some of it incorrect and leading to problems. They signed the agreement that they would not do that, so Dad’s advocate (their manager) is going to speak to them rather strictly. They’ve also been speaking with Lady Friend, which they’re not supposed to do.
It can be such a tough thing to know the right thing to do.
My father is 99, still at home… with the help of his much younger wife (who resists hiring help but should because she is really overworked/grumpy). They do benefit some from palliative care services, including a doctor who visits them at home. A few months ago I did call to try to better understand whether he would qualify for hospice services if desired. The nice phone rep offered to set up evaluation… I quickly declined, not wanting to be an inititator on that. But I do feel like hospice could have services that could help Dad keep organized and stay at home.
Dad continues to do well - he was transferred to a rehab facility yesterday. Swallowing is really his one remaining issue, but of course it’s a big one.
We got the results of DH’s MRI. The report noted "Some disproportionate volume loss in the hippocampal regions.” Not great, but we need to compare this MRI to the one he had in 2024 and see what the loss from then to now is. The follow up appointment with the neurologist NP is tomorrow afternoon. ChatGPT gave me some questions to ask.
glad to hear your father is improving. Hope he continues to improve and that he makes progress with the swallowing.
Sending big hugs to you wrt your DH’s ongoing issues. I hope the neuro appointment gives you some good information. 
thanks for the update. I hope tomorrow’s appointment answers more questions than it raises for all of you.
OMG, give me patience. DH: “So it looks like I have to go to the neurologist again.” “Yes, I told you already - we’re going to drop DS off at his apartment, go to the appointment, and then get an oil change.” “Where is it?” “XXXX Street, same place we went before.” Two minutes later, “So it’s XXXX Street, in XXXX town?” “Yes.” Why can’t I be more patient? Every morning, I wake up thinking, “Be patient, be patient, be patient,” and then I’m not. I am struggling.
I pray there is a treatment for your husband.
It’s very hard living with someone with memory loss. I hope you give yourself a lot of grace. You are going through a lot, on multiple fronts!
It’s no wonder you are struggling to be patient with all you have going on with your Dad, your H and your S. Just wanted to say that I am thinking of you.
ML, give yourself some credit–you have so much on your plate and this is the filling of the sh-- sandwich. xoxoxoxo
So hard!! I know with my mom I have to fight against the thought that if she’d just try a little harder - I get so impatient! I hope they find a clear cause that is treatable!
@MaineLonghorn give yourself a lot of grace. Dealing with my father has felt like dealing with a toddler, and that was never my favorite stage of parenting. It is very, very difficult to be patient and I can only imagine it is tenfold worse when it is your spouse, who you are completely used to having a different relationship with. Huge hugs. My only advice is that you need to build in your own support and respite early on…even when it feels unnecessary or selfish. This is likely a marathon, not a sprint. You need to preserve your energy, resolve, patience, compassion in any way you can.
I was at an Alzheimer’s event and the speaker (who trains staff at AL places) said if you can’t answer the question like its the first time you’ve heard it, you need a break, even if it’s just to go stand in the bathroom.
and I thought well that’s lovely, but I would be in the bathroom all day…
@MaineLonghorn you can do this. Some days are worse than others, for sure. You are a great wife, daughter, mom – but you are still a person all your own.
I’ve noticed that when there is family stress and/or tiredness… my memory / attention is not as reliable. (It becomes really obvious when flubbing on pickleball scores.) I imagine work stress would do same to me at this age (64), but I’ve been retired since 2020.
So, today we finally saw the neurosurgeon for my dad’s follow up. 20 weeks and 1 day post-op. The appointment was ok, I guess overall it was positive. We learned that there is no more visible swelling. This is good news, I guess, but it also means that a lot of the deficits he has may be permanent. His visual field is definitely permanently damaged.
The surgeon said from a surgical perspective, everything was a success. Tumor completely removed, surgical site healing excellent.
We had to ask a lot of questions and kind of lead him toward getting referrals for a neurologist and specifically for cognitive rehabilitation.
I will say that my dad seems to have turned a corner in the past 2-3 weeks, and the Dr. said in his experience, it is not uncommon for it to take 6 months for a geriatric patient to turn that corner and another 6 months to regain significant pre-surgical function. So, at least we have some idea of what we can hope for. My father really wants to be able to read again, more than anything, so we are going to push ahead with a neuro-ophthalmology appt. and visual rehab.
Any chance somebody here has setup experience with parent using a CapTel phone? They provide caption / transcript service.
LP Google-Blue
Dad has had one for years (not sure the details of how they qualified, but his hearing is quite bad even with hearing aids - he started having ear surgeries in his 20s.) But it is upstairs in den so no longer gets used.
At this point he and his wife both could take advantage of the Captel if it got moved downstairs. I am not sure what is involved. They have VOIP/internet phone service, so I assume it gets plugged into modem/router. Per call to Captel, there are technicians in their zip code. But hoping to learn more here if others have experience. (Also thought I’d share in case good idea for others.)
In case other familes are interested… from website - “ClearCaptions verifies your eligibility for our service based on hearing loss, U.S. residency, and internet access through a few simple questions”. Requires interenet access.
From google - To receive a phone at no cost through federal or state programs, a hearing healthcare professional (such as an audiologist, doctor, ENT, primary care physician, or hearing instrument specialist) must sign a certification form confirming you have a hearing loss that benefits from captioned telephone service. [1, 2]
Clear Captions is a similar device. The actress who played Cissy on Family Affair does the ads (for those of us old enough to remember the show).
I’m sorry your family is going through all of this! How old is your dad?
89. He worked until he was 78 (UT engineering professor for over 50 years) and was in amazing shape until 2019 when he had heart surgery that was supposed to be low-risk but he ended up having many problems resulting from it.
Lots more has happened with Dad. Caregivers are breaking the agreement they signed. One in particular, Dad’s favorite, has dropped the ball so many times that I told RN manager/advocate to send her a statement in writing that one more infraction will mean termination. My sister and I really wanted to let her go now, but she really is amazing with Dad, so we reluctantly agreed to give her one more chance. Lady Friend has been asking this CG for information. ??? LF has been asked not to communicate with CGs about health matters. Even my sister and I don’t ask CGs!! We wait for updates from the RN. But it’s on the CGs to tell LF they can’t legally share information.
Then yesterday, rehab sent Dad to the hospital to get his nasal feeding tube replaced, after my sister had already authorized the insertion of a stomach tube. And they didn’t notify the RN or my sister. ??? It’s a different hospital than he was in before, so they knew NOTHING about him, even that he couldn’t swallow properly! LOTS of phone calls and texts yesterday and today. Bottom line, a stomach tube was inserted successfully this afternoon, but Dad has already tried to pull it out (he pulled out the nasal tube yesterday). His sodium level is high since he’s so dehydrated (he has horrible veins like me so they couldn’t get an IV needle inserted for a long time). They’re going to keep him overnight to monitor the sodium level.
We had the follow up appointment about my husband’s brain MRI. There is some atrophy, but nothing unusual for someone who’s 72. There really wasn’t more loss since his 2024 MRI. But since he’s struggling at work as well as with his memory, he will have a PET scan to test for Alzheimer’s. He can’t have the quicker lumbar puncture test because he has a bleeding disorder, Factor XI Deficiency. If he does test positive, the most effective treatment is risky due to his increased risk of brain bleeds. He is in remarkably good spirits while I am not. We have to wait for the hospital to call to schedule the scan. As soon as I know the date, I’ll make an appointment with the neurologist (MD, not PA). It’s really hard not to worry, but I know it does no good.
I’m so so sorry! Sending lots of hugs and prayers all around!
