rockymthigh, hope the probates are simple and done quickly. Nothing like having some court thing drag on and on and on.
lookingforward, sending hugs and certainly vent away. It doesn’t hurt us and lets you mull over things that maybe your spouse is tired of hearing about. And the collective wisdom continues to support. Even just knowing others got through it is helpful. Even people who do just the opposite of what I would do are helpful because it clarifies my thinking and sometime even a new idea actually takes root.
I just got back from a quick trip to see Mom. I’d been on a long vacation and my brother did the monthly check in while I was gone. But I like to see with my own eyes. And you find out stuff… Mom was pretty good for me to see her. She had had bad days on the phone when she couldn’t talk, so I was worried. but she had a good day for me. We got out to the cemetery and put up flags, an old family tradition. It was a nice day.
Not so good was finding out that the AL place changed nurses and the director left. They NEVER let me know this stuff. It makes me mad that they don’t say, not as much that people leave, although the changes are tough. And I hadn’t been there for more than 60 days because when I was there they did the 60 day qualification for hospice and they had done another when I was gone (AND didn’t mention it or tell me results until I was there in person!! grrr). Anyway, for those curious, Mom has been on hospice quite a while, months not weeks. I want her on hospice because I do not want the AL place to drag her off to the hospital, which, yes they MUST do even for DNR, etc cases. And they provide another set of eyes for Mom, their RN comes once a week, and their aid gives Mom a shower so there is independent verification that Mom isn’t sitting in wet diapers until she gets diaper rash.
So the evaluation made me sad because Mom has forgotten how to walk and is wheelchair bound most days. And is entirely incontinent. And now is forgetting how to swallow so is beginning to live on Ensure much more often. On the other hand, she had a new perm and looked like a fuzzy sheep. She knew me and I was able to send a nice selfie to my brother.
Info is just to let others know this happens. I kind of knew it already from watching my grandma (but I was young then) and recently watching my dad’s second wife go through it. She went down much faster than Mom is, though.
@esobay, my ex-mother-in-law was just decertified for hospice care. She has late-stage Alzheimer’s disease, and the hospice-care benefit allowed provision of once-a-day visits by a home health aide who assists my ex-husband with taking MIL to the bathroom. She was decertified because of “inadequate decline.” Ex-h told me that hospice bills $260 per day for this service; Medicare reimburses the hospice provider at $135 per day. The aide makes less than $20 per hour. I suggested that they hire a private caregiver to come in to help with the toileting; I found an ad for someone who charges $10 to $13 per hour. My ex-FIL, however, thinks he shouldn’t have to pay for anything. It’s frustrating.
DH’s dear 96 YO aunt went peacefully to heaven Thursday after a brief hospitalization for congestive heart failure. She was too fragile for really aggressive treatment, and went back to her care center on hospice care, and went in days - I believe she knew it was ‘time’. She was quite a fighter - survived a stroke last year and worked really hard through rehab and did great. Celebrated her birthday last month with her surviving siblings - they cherish that time together because father time is always lurking when one gets beyond 80. Aunt did pretty well with living longer than siblings to date - four younger siblings still living, including MIL. Longevity in the family - her parents lived to ages 74 and 83; three younger brothers died at ages 79, 82, 83 while two brothers died at ages 38 (accident) and older brother died at age 58 (we are inquiring to find out what he died from in 1970 but we also think an accident). Four older sisters died at ages 77 (heart attack), 89 (after several heart attacks over the years), 93 and 94 - declining health. H comes from good stock - other side of the family also has lots of longevity. Not such good stats from my family, but hope our generation does better - I already survived aggressive stage III cancer thanks to medical advances that could not save my dear dad (he would have a chance now that they have developed some chemo to fight small cell lung cancer, and better advances with radiation and other medical modalities).
Encouragement to all in the trenches of dealing with issues with parent medical, residential issues, estate, etc.
@rosered, that is sad that we have to hope for more decline to keep services. I am grateful that so far, Mom is getting declines enough documented. When I first moved to her to Memory Care (about 4 months ago) the case manager for hospice also changed and thought she might be decertified. But then she had a couple of falls. Can you encourage exFIL or someone to aggressively document falls and slips AND ask that she be rechecked for certification late in the afternoon? take advantage of the sundown effect? Having Medicare pay hospice to give Mom showers helps a lot with the care costs, but it is more the second set of eyes that is my main comfort.
@SOSConcern, sorry for the family loss. Although everyone thinks that it is more OK at that age. My grandmother died at 96 after years of Alzheimers and everyone said it was a blessing finally. And it was. Still we miss her. Missing her while she was alive and not there was painful, but missing her forever was also pain.
Sorry for your loss SOS. So frustrating rosered. Maybe if FIL doesn’t get any help, he will realize he needs to pay to get it.
Can stopping Aricept cause a sudden decline? Both of my parents, 80 and 81, have early dementia. But my dad took a precipitous backslide when I saw him last night (I had just seen them a week ago). My dad has a master’s degree in computer engineering and was an early computer adopter. He asked me to help him with his computer as he couldn’t get online. I got him online quickly, but once I got him online, he couldn’t figure out what to click to navigate around. He was getting internet, e-mail, e-scripts…all confused. He had more speech aphasia, more of a shuffling gate (my parents are very physically vigorous), and difficulty recognizing things such as the menu in his hand (knew it was a menu but didn’t recognize it as the menu he sees every day). The decline wasn’t so dramatic that I suspect a UTI or infection, though I do know he is having prostate problems. It was just the typical things I have seen on bad days but each symptom a bit worse and all occurring at once.
I noticed an empty bottle of Aricept that it looks like he had been out of for a month. He also takes Namenda but had plenty. He can’t take my mom’s as she isn’t on anything (she has no other meds and no difference in her symptoms on or off the Aricept). My dad also had a stroke a couple of years back due to “amyloid andiopathy” in which the amyloid plaques get into the cerebral blood vessels cause them to bleed. I expect small strokes to occur intermittently as the amyloid will affect more blood vessels but typically small ones causing a vascular dementia as well as the Alzheimers. But his symptoms were not to the extent that I felt he had a significant head bleed such as a subdural hematoma. Not much we can do to prevent the amyloid plaques so I don’t see a reason to get that evaluated at this point. But, has anyone found significant changes on or off Aricept?
GTalum, no I didn’t notice any difference off Aricept. Mom had been on it about 2.5 years I think.
Sometimes I think Mom has mini-strokes because she goes through days when she can’t talk, walk, or swallow, but then she will perk up and be able to get up and go for a ride in the car with me like she did this week. It is just that the step up never gets quite back up and the steps down are more frequent and farther.
I am sorry for your dad in this stage, gets frustrating I’d imaging both to live and to see. heartbreaking doesn’t being to even cover it.
We used to call Aricept “thought glue” because in some cases patients did seem clearer when on Rx. But its primary goal is to slow the progression, not treat the symptoms of the disease.
So sorry @GTalum about your parents’ situation and dad’s decline. FIL was having some issue with mini strokes and other signs, and his doc didn’t check his carotid arteries - the surgeon was shocked any blood got through his right carotid artery - so he had damage from strokes he should not have had.
My mom was on Aricept. It probably did help her.
With some, I imagine all of a sudden the coping with the disease of Dementia/Alzheimers just becomes overwhelming. You just don’t know what areas of the brain are getting affected and when a synapse all of a sudden ‘works’. Then the other issues and how to manage them.
My mom was pretty calm and accepting that things were getting taken care of around her. She had a little dog to give attention to, and he gave her great joy.
No crystal ball. If your father is getting good medical care, perhaps talking with his primary care physician on his current status. Review with the pharmacist on current prescription list and what hasn’t been filled or when things have been filled (maybe he has taken meds in-properly).
Since your dad is use to being very high functioning, it may be very difficult to be calm and accepting of his current medical issues.
Hope all your family along with medical advice can come together on the best way to move forward. Sounds like a very challenging and changing situations. Prayers and hugs.
What happens when you notice the folks are ALWAYS wearing the same unwashed garments and broken footwear and resist suggestions to change or repair? Also never see ANY evidence of clothing being washed any more when we visit them at home.
HImom- there are many ways to answer your question. It is extremely relevant to notice such diminishing in the ability to perform ADLs (activities of daily living). Check the fridge for expired food, etc., if they don’t have regular household assistance. See how often and how safely they are able to bath. Not being able to keep oneself and one’s clothes clean is usually a marker that it is time to change the amount of assistance and supervision. Also be sure there is no acute change in health status that might be driving the change.
My thoughts are with all here who are grieving or navigating transitions.
We have had their fridges replaced because of the old food and thermostat issues. It was really that H, D and I couldn’t bear the thought that they would give themselves food poisoning that caused us to foist new fridges on them and the sibs chipped in and one sub helped me empty the fridges and toss all the food. They had 3 fridges and a freezer. They insisted on keeping one so now they have two new fridges and one old one (they keep wine and beverages in it).
There are a lot of issues but very tough to get consensus among sibs on much.
Everyone agrees there are issues but prefer to ignore and wait for SOMEONE to magically step in and improve things.
My dad doesn’t have the typical strokes that may come from stenosis of the carotid arteries (embolic strokes from a clot which are the majority), his would be more very small hemorrhagic strokes from build up of amyloid (yes, the same protein found in Alzheimer’s) in the cerebral blood vessels. Really, nothing can be done about this. My only question is to not to bother, as he is obviously having trouble keeping track of his medications, as none of the meds are “essential” (Namenda, a cholesterol med, and a BP med I’m not sure he needs). Or, having an aide manage his medications and make sure he takes them. This would be a “big deal” and likely to be met with hostility. I’m not sure it would be worth it, unless the Aricept was really benefiting. But I’m not sure there is any way to tell. He is 80 and his mom died of Alzheimer’s at 84.
GTalum, I am so sorry, this is such a tough time. It may be worth fighting the good fight to get them help now–it sounds like it’s going to happen sooner or later, and if it’s sooner, they may be able to stay together in the least-restrictive environment. My dad really fought it, but once he had the aides (mostly to help with my stepmother who needed much more help; I did their pills although the aides would have done so), it was so much better for them both.
FIL has been really having ups & downs, two more ER visits, weakness, edema, etc. We keep telling him not to go to the ER, but he panics
FYI, if your senior takes an ambulance to and from the AL, the ride home is not covered by Medicare, $1500 thank you. I have been successful in finding wheelchair taxis for the visits this week
Also, love the AL place, send a 96 year old to the ER alone, then when a friend shows up at the home, claim HIPAA won’t allow them to share his location! Really? really?
Problems snowball as they age, don’t they? Sometimes when I’m in the ER with my Dad in the middle of the night I just wish the ambulance service would take him back to his AL apartment. He’s always sent to ER with no coat, no shoes and the service would take him right to his room. But then I think of waiting around until the service shows up when I could just take him myself and get him to his bed and me back home sooner. And of course the fee. I think it’s around $65 for a wheelchair van. (Stretcher much more $$) They told me that after 11 pm everyone gets a stretcher. If you order a wheelchair van they will send the stretcher and only charge you for the wheelchair price. (I know that’s prob specific to this company.)
H just announced he wanted to use a week of vacation time (during company shut down) to make a second trip in one month to make a ramp for dad’s wheel chair. I told him when he goes up in a week (canoeing camping fishing trip), to make the measurements at stopover at parents’ home with his local brother and figure out what exactly is needed and hire the local contractor that has done work at parent’s home. DH’s 850 mile car trip each way and using up a week of his precious leave time after seeing his parents in such a short time is not being very efficient. H prides himself in wanting and able to build the ramp, but just not good use of our resources (his time is very limited). He actually is getting a project so may be working even though plant is shut down. He had discussed this probably with both my DDs and a friend but not with me (even though he insists he has discussed with me). Finding out this morning after weeks of having it ingrained in his brain that this is a good idea did not have a good reception/exchange with me. When our children were young, he thought it was OK to use almost all of his leave time with a fall hunting trip and a summer canoeing/camping/fishing trip (none done with young children or me) - it spilled over when he asked to take a week and he took 12 days! Now I ask for specific dates and approve flight dates because he has taken advantage.
Tonight I am going to ask DH (after he has a clearer head) to have local brother make some measurements so he can plan something before he goes up - they can re-measure and maybe meet with contractor the short time he is at his parent’s home.
In the mean time, I could not even get him to mix up a bottle of weed killer for me. And he may have an OOS work assignment which means a lot of work and planning by me managing our DDs and the house.
Good thing we have a long marriage and can work out these ‘details of life’.