MIL got very sick very suddenly and ended up hours from death by the time she got the the hospital. She had an infection that went septic and when she recovered she was not the same. She was very confused and for a while we hoped her function would recover as she regained her strength. It did not. The only diagnosis we have is from her GP, based on a cognitive test in his office. If it's dementia it seems to come and go depending on her interest. For example, she can't use the new phone (she didnt want a new phone) but she can use the new TV no problem (she likes the tv). We dont even know if she HAS dementia, we are operating on that assumption.
I did some research into sepsis at the time and it seemed to indicate that seniors with a bit of mental decline would blow up into dementia after a bout of sepsis. When I raised this possibility with the Dr they seemed irritated and said I shouldn't look up stuff on the internet.
(well if I lived in a place that didn't take a YEAR to see a gerontologist, maybe I wouldn't have to!)
If her dementia (or whatever is going on) is a result of her sepsis, could there be better/different treatment options? I *really* wish we could see a proper doctor.
???
I don't honestly know whether her having recovered from sepsis more than six months ago would make any difference in figuring out her best treatment options from here; but it would be nice to think that the GP is actually doing some figuring, based on some sort of rationale, and at least contributing to if not personally coming up with a recommended care plan.
And you literally have a 12 month wait to see a gerontologist?
This is a bit bonkers. I'm just staring out of the window and not having any ideas, sorry. Is it still a 12 month wait or has she been on the list for a while now?
Can you go back to the GP, clear your throat, smile sweetly and say: "you know how you said MIL dearest mustn't be left alone, that being your professional recommendation 'n' all? Would you care to expand on that by explaining your assessment of her current condition and likely care needs going forward?"
It's baffling when they seem content to be no more use than an ashtray on a motorbike. It's not like you're asking silly questions. Is this lackadaisical attitude normal where you live, could you vote with your feet and find a better GP or you would you not expect the alternatives to be any better?
There are so many layers of crazy here that i wouldnt believe if it i wasnt living it.
She saw the first gerontologist (I'll call her Dr Death) early summer. I didnt go to that appointment.
(that specific dr used to be a GP, and her negligence killed my mother, so i dont trust myself to be in the same room with her. Even her NAME triggers me so bad i melt down)
We dont get to pick our doctors, it's more of a 'you'll take what you're given and be glad of it!' system of healthcare here. So Dr Death started her on 'something', with a plan to see her in a few months, but Dr Death took sick leave, which put MIL back in the queue. Then we get the call that Dr Death is just ... done....
me, incredulously "but someone is taking her patients??"
secretary, bored "no, sorry."
me, baffled "but but... what do we do?"
secretary, probably playing candy crush on her phone "just ask your family dr to refer her to someone else"
So we did, and it's six months to see someone, and we will be back to square one. They will assess, tweak meds or whatever and we will have to come back in a few months.
Her GP is less than no help. My MIL despises him and i dont blame her, i dont like how he talks to her and his attitude toward women is appalling. He has some crazy ideas, I cant even go into it because you'd instantly dismiss me as a loony. But he cant help us.
PLUS, as she isnt MY mother, anything i say is automatically dismissed. i did copious research, mocked as going to "dr google". I put together a big package of info from different websites on caring for dementia parent at home, made everyone read it and initial. I contacted the local Alzheimers society and got more info and set husband up with a support group. But if - god forbid - i say "maybe she shouldnt eat candy all day and stay up all night?" because that turns into "You resent my mother! you dont want her here!"
I cant win.
Husband weirdly has somewhere he has to be almost every evening, so MIL follows me around and I feel like i need entertain her. She is alone all day in her room with the heat turned up to 'nuclear' and the tv on full blast. She comes out for supper when i get home and then she wants to hang out, which i understand because MY GOD she must be bored/lonely, but I have STUFF i need to do in the evenings, between work and commute I am out of the house at least 55 hours a week. I'm tired. I'm fat and I'm fifty and I just dont have the stamina i did ten years ago. I used to have my evenings to read, or do housework, or crafts, or watch tv, god i miss tv.
This forum is the only thing keeping me sane. Sorry to unload my entire spleen.
If you don't feel comfortable with this PCP, find another one.
Last year, I accepted that my mother was diminishing in her capacity. At home, I kept everything simple and helped when it comes to scheduled meals, tv time, or helping her with calls. I learned to not be accommodating to her every need and observe whether she could actually do something or not or just needed help. She was fairly independent before but her complaints increased as she was loosing her cognitive ability. There was all around frustration with her growing dependence. Aside from her growing dependence, I questioned whether something medically going on.
Doctors don't seem to appreciate family speculation. As I described symptoms her pcp wanted to hold off. For what I'm not sure. I pushed for basic labs (which the insurance has denied because it was not prescribed by her pcp) and the lab results showed mom was severely anemic; she was treated, finally. Had I not asked for the basic blood lab, she would be a goner today. Her cognition improved significantly.
However, treatment plans of subsequent infections recently have not been timely and getting further evaluation is still a challenge. The medical diagnosis still isn't pinned down and her pcp seems to be writing mom off to her age, not a supporting any further tests.
In order to find help or find AL/SN for her, I had to address her memory care needs. Her pcp won't give a straight answer when I ask is it dementia or not. With regards to the cognitive decline or dementia it depends on who does the assessment and at what particular time.
I talked to two home health/hospice providers and one felt she was without a diagnosis to qualify her and she was just in recovery from an illness or infection. Yet, the other provider felt they could make a case because there was a change of circumstance with her decline after an illness. I had that hospice nurse talk with the pcp, and dementia qualified her for hospice. It's all feels subjective not objective at this point. I think her pcp went along with hospice to dissuade further evaluation. However, the hospice nurse has clarified that if we wanted to go that route, we could still revoke hospice or comfort care.
I'm not sure what they put her on in hospital for antibiotics but she was in there for almost two weeks, first to get stable, then they went in and got the infected gall bladder.
Hubs spoke to the hospital at length, we were there almost the whole time. He talked them into transferring her to the geriatric ward for assessment when she was discharged from surgical. Which was great as we live two hours away and we didn't want her sent home to an empty house....
So they sent her home to an empty house on the day were were home taking care of our own lives for five seconds, instead of assessing her in geriatrics.
Her timeline is basically
march - got super sick, hospital, surgery, home
april - follow up with family dr, he did assessment, declared she failed, referred her to a geriatric dr
june or july - one visit with geriatic dr who redid the office assessment (same result) and put her on 'something' and said come back in three months and we will see if this helps. (apparently this medication will help if she has one kind of dementia and wont hurt if she doesnt? I wasnt there)
October was supposed to be her big moment, get her follow up with geriatrician and get an actual diagnosis, but her dr went out on sick leave, so her appt was moved to december.
December - her geriatrician is not coming back. Nobody is taking her cases, we are just out of luck. We got a new referral but now we are starting again with a new geriatrician and if we are LUCKY, we will see them in six months.
Our timeline
March, april, may - husband spent his time running back and forth from our place to hers (two hours away). Ran himself almost to death.
June july august - we built a room on to our house and renovated the downstairs powder room to a full bath. Every weekend was painting, cleaning, picking colors based on research that should sooth elderly etc etc.
Sept oct she came a couple times to stay over
Nov she came for 5 days, had a tantrum and went home after two (she does NOT want to live with us. her GP took her license and she cant drive - thank god - and if she stays at her house my poor husband will run himself ragged going back and forth. He physically just cant keep this up, especially in the winter, he would have to move in with her, leaving me solo, which made me agree to move her in)
December she is basically living with us. Hubby takes her home once a week over night. She takes care of her own bathing, toileting, takes her pills that my husband make sure she has, she has a fridge in her room and basically eats snacks all day. (I have made the case for nutrition, i was over ruled) She sleeps most of the day and stays up most of the night watching tv. (I made the case for sundowning and she should go to BED at night etc, again, over ruled)
That's the highlights.
When did the sepsis happen?
What was your MIL's mental function like previously?
What treatment is she receiving now, if any? - and what's the GP's plan for managing her ?dementia.
2. March
3. I thought her mental function before was average, a bit flaky, but she's been a bit flaky for the 15 years i've known her
4. her dr put her on 'something' but i'm not privy to that specific info. There is NO plan at ALL for 'managing' her, except her gp said she shouldn't stay home alone. That's literally the extent of the support we have gotten. We tried to get some in home support through social services but without a diagnosis there is nothing they can do.