My father passed away almost a year ago (Jan. 15 2020) from pancreatic cancer. My mom has been depressed and alone alot due to COVID restrictions. While we know she has been depressed and grieving, it is hard to imagine extreme grief would be the issues with her balance, falling and cognitive decline. My siblings and I started noticing she was not 'right' in the fall with her personality, repeating things more than usual, forgetting and misplacing things often and recently, she has been falling and has poor balance. She fell 4 different times over the last two weeks with the last one happening in her shower a week ago. She has refused to follow up with her doctor but my brother was able to take her to urgent care who then sent her to the ER and she was admitted to the hospital. Since being admitted, she is very confused, sounds weak, doesn't know where she is, has tried leaving in the middle of the night and is saying and seeing things that are outrageous. MRI and scans do not show a stroke or anything unusual, according the her doctor. I asked about UTI, bloodwork (she has diabetes and arthritis) and blood panels and all seem ok along with medication. He said he administered the MOCA assessment and she scored a 14 out of 30. She will be going to a care facility soon for PT/OT rehab. Has anyone else experienced this and is her 'dementia' reversible where if she gets back balance and strength, she could return home, and live alone? She is 73 and lives in a handicap accessible/one story home. My siblings and I all work full time and cannot be her caregivers if she returns home. I am struggling with grief and guilt as I was the one who instructed she go to the urgent care to see if she hit her head or was injured in her fall and thought maybe she was experiencing mini strokes or was not taking her medicine correctly. I did not expect that she would still be in the hospital and be sentenced to life in a facility with no chance of returning home. I am writing to see if anyone else has experienced something similar with a parent and advice. Thanks and sorry for such a long post.
If Mom was showing signs of a Dementia prior to Dads death, yes any change can make it worse. Being out of their comfort zone too. The hospital stay doesn't help and rehab doesn't help. The strangeness and the isolation. PT and OT are only a couple of times a day. The rest of the time the patient is on their own. If she hasn't been evaluated by a neurologist that would be the next thing I suggest. Dementia does not happen overnight. Its gradual where u really don't see the early signs.
If she wasnt taken to the ER, she'd still be home, falling and confused.
Strokes don't always show up "at first". When we had a neuropsych eval for my mom, they discovered an "old stroke" even though she'd had CAT scans on admission several times during earlier periods of confusion.
I think you need to follow up with a qualified neurologist and perhaps a neuropsychologist to determine exactly what is going on in her brain.
With dad there, he could have staved off some falls, spoken up for her, when she was struggling with words, kept the place cleaner, basically made her look 'independent' when she was anything but.
Her brain is aging out. It's not a nice way to say it, but I see it both my mother and my MIL. MIL is MUCH MUCH worse than mom, but both are 'ditzy' (not a nice word, but very descriptive) and make odd choices and comments. MIL lives alone and has for 30 years. She had a fall-UTI-ER stay and then 12 weeks in a rehab, coming home just before COVID. We then noticed how bad she was. One more fall and DH will have to invoke POA and have her placed, very much against her wishes.
Mother just very slowly is mentally slipping away. YB covers for her, but if you talk to her longer than 15 minutes, she's exhausted from trying to look "OK". She will age in place, no matter how much care is required.
I think this is a dynamic that is repeated over and over in our elderly who have a 'gatekeeper'.
But what concerns me is her very low score on the MOCA test which implies dementia. It needs to be followed up on by a neurologist or, preferably, a neuropsychologist to determine the cause. And yes, some dementias are reversible but I wouldn't get your hopes up. I agree with the doc about finding a care facility for your mom now. My wife was a school principal and I know the stresses that come with the job. Being a dementia caregiver and a school principal are not compatible vocations.
So many people experience guilt or regret after doing something that was, in fact, the proper thing to do. What would you have done otherwise? Her fall could have resulted in a brain bleed. Your response was the correct one.
Part of your concern is her being “sentenced to life in a facility”. I know that that's your perception but it needn't be. Life in a person-centered care facility (MC or NF w/ an MC wing) can mean appropriate loving care as the disease progresses by a staff who better understands her disease. It can mean being able to concentrate at being a principal, and a more normal family life.
The rehab might give her a structured atmosphere and regular interactions with others that could help her come back to her old self.
So my advice is don't panic. She's not "sentenced for life". She is going to go somewhere where she might be able to recover. Best of luck to her and to you.
Decisions mad with LOVE are always “better”, EVEN if they are not decisions that can make everyone happy.
My story? I called my mom, age 85, every day at about the same time, and one day when I called her, I immediately realized that she was having significant difficulty speaking, a primary symptom of stroke. I WAS AT THE TIME A PRACTICING SPEECH THERAPIST. I didn’t question her about what I was hearing EVEN THOUGH I KNEW she’d had a stroke, and didn’t call her u til the next morning, when after a whole lot of cajoling, MY HUSBAND got her to get into our car and we took her to the hospital.
She’d had a left hemisphere hemorrhagic stroke (VERY SERIOUS). By her second day in the hospital, I was able to determine that her cognitive skills were intact, although her ability to express herself was definitely diminished.
By her third day in the hospital she was telling her neurologist that she wanted to go home, and he allowed it. I stayed with her for a week, and she threw me out. Subsequently she lived by herself for 4 more years, before falling and breaking her hip, at which time she was diagnosed with dementia.
After over 5 happy years in a very good local nursing facility, she died at EXACTLY 95 years of age.
You are reaching out much too far. Request that a comprehensive cognitive assessment be done while she’s at the rehab facility. See what the prognosis from it is. After observation and formal assessment, the OT and cognitive assessments will give you a better sense of what she needs than she has now.
Going back, I am SO GRATEFUL that I didn’t bother with guilt after making the HUGE MISTAKE that could have killed my mother. The experience taught me to stay in the moment and do the very best I could for her and love her to pieces and ALSO, to establish the best balance I could between taking care of her and taking care of myself (only child).
Remember, if your concerns are her safety and best care possible, and you’re deciding out of love for her, you are entitled to be at peace with what you’re doing.
The only time that Dementia type symptoms may go away is if there is a physical cause for them. Undiagnosed diabetes, kidney desease, low potassium, thyroid, maybe even a medication. A UTI will cause Dementia type symptoms. Once these problems are cared for, those symptoms will go away.
I don't know why you feel guilty. Your Moms Dementia was not caused by something you did. She needed to find out what is causing her falls. Let her go to rehab. They maybe able to determine the cause of her falling. She may have neuropathy in her ankles and feet. Diabetics suffer from this. No, there is no cure. Its nerve damage. OT/PT will strengthen her after being in a hospital but it will not cure the Dementia. Dementia is neurological not physical.
Once in rehab you can determine the next step. You need to see how she progresses. If its determined 24/7 care is needed then decisions will need to be made. The Social Worker can help you with a Medicaid application but don't fully depend on the SW to follow thru. In my state u have 90s from applying to get Medicaid all the info needed to process her application and spend down her money to the income cap they allow. If not done in that time frame you start all over.
as my FIL said,,,,"These bodies are not made to last".. So Death is the part of Life we don't like to focus on. I remember seeing a question on the forum.. This person was afraid of Death and/or dying. I didn't want to respond.. I think I will be brave at the end, and them maybe I will have ALZ.. I don't know.
All I know, if my kid is not with me *even if she is wieth me) I am going to send her signals that I am around, and she will hear me laughing with her at her teasing her when she least expects it... :) for a month or so...
My dad did that to me.. My brother a little bit, and my mom when she said she was going. But If I need backup or help, one of my angels answers... and I feel a sense of calm..
An ER doctor told me: "Everytime she comes into the Hospital, I little bit of "her" will be gone. In otherwords, your loved one is more fragile. The more visits to the ER, is proof that your LO is getting more fragile, physically and mentally..
and THIS IS HER NEW NORM. She Will Heal, but she will not be 100% as she was prior to this visit. This is Her New Starting Point.
This is what we need to remember... This is the New Starting Point... Now.. until she has something else that is going to land her in the hospital again..
That was difficult to hear, but it gave me perspective as to what to expect from here on..
Take a deep breath, and breathe, and know you are doing you best, and just follow your instincts, and do the best you can...
Look for a 6 pack near you... a single family home with 2 caretakers and 6 residents. Usually they have a permanent wheel chair ramp to the front door.
ask social workers, in home care facilities near you. local hospitals or salvation army, or anyone else you know who is going through this.
It is not your fault.... As FIL said, these bodies are not made to last forever.
Work colleague's Father died very suddenly. Mother had an instant breakdown, massive confusion which somewhat lessened but couldn't ever remember he had passed away. Sudden DX of adv dementia did not make sense. Scans rules out strokes. Family had noticed mild signs - they concluded Father had been covering up very well for a long while. That lady stayed so confused, fell, broke one hip, then the other, died before NH paperwork was even signed. No medical reason found for the confusion, just appeared to be massive grief. So sad to lose both parents together but in the end, less suffering for the Mother.
The other was another Father passing suddenly, very traumatic. The Mother already had depression, which worsened. Then confusion, falls, balance issues. Brain tumour found (aggressive type) & quick passing resulted.
Ensure all the usual culprits for confusion are ruled out, TIA/stroke, UTI, other infections, kidney, liver function, dehydration, malnutrition. Have hope she will improve but make realistic plans for longer term care as needed. (((Hugs))) to you for this hard time.
My father was home alone during the COVID lockdown and I firmly believe the stress of grief and isolation broke his brain. My mother passed 18 years ago, his parents 31 and 8 years ago. He’s living in my grandparents house where furniture and everything is still the same and constant reminders of what was loss. During this time I was pregnant, bed ridden and very nauseous so I was unable to have our normal convos but was texting to check in regularly.
A neighbor found him 50 lbs underweight (me and my friends and his neighbors all were ordering him groceries and he was cooking but not eating) and they called me. He went to the ER and they ran tests to check for stroke which came back negative.
he had to go to therapy and it became clear he was extremely confused. He kept asking me if I spoke to all the aforementioned people that passed away, would call me 40x per day, kept asking about a wedding (that was not happening).
I had him checked out by a neurologist. They did an MRI, CT Scan and MMSE exam. The CT Scan revealed he had mini strokes and he was diagnosed with vascular dementia.
I think you should look into a neurologist to run additional tests. Specifically the CT scan. He had a MRI done in the hospital and it didn’t reveal the strokes but the ct scan did. So it might be helpful for you to go to a specialist since you know your mom best.
I have linked up with a few support groups to help me through this time and many have affirmed me that they are seeing cognitive decline occur at a more rapid rate due to covid and the isolation.
I am very sorry you are going through this. I wouldn’t wish this experience on anybody.
I’m happy to chat more if you have questions.
As well as the fact that you probably do not see her as often as you did previously so declines are more apparent to you now.
It is also possible that while your dad was ill you often overlooked signs that your m om was declining as well. And people with dementia often are very good at hiding signs and symptoms of cognitive decline for quite a long time. (often 10 years)
It is also possible that your dad was aware of some decline in mom but also covered for her.
The important thing is that your mom is someplace where she is safe. That could be a Memory Care facility, Skilled Nursing if she needs that level of care or at home. She would need caregivers either hired or family 24/7. this is a big commitment.
Will she return to "normal" difficult to answer.
See how well she does in rehab and assess the situation with the help of the PT and OT and Social Worker.
Given the fact that she lives in a home that is prefect for her if caregivers can be hired to care for her that would be the ideal situation.
We've found that with Mom's dementia the decline isn't gradual so much as it's like going down a set of stairs. A health or emotional crisis will take her down a big step, then she'll just be there until the next big event. Dad's death in 2018 was a huge decline, and so was moving to a nursing home. She just got back to the nursing home after 2 1/2 weeks in two hospitals, and she's a shell of who she was. I've put her on hospice care now, so she won't have to go through being displaced again.
Your mom may or may not bounce back. She's got her age on her side, but the combination of isolation, losing your dad, and a hospital stay are going to be tough blows to come back from. She may come back a bit, but all the way -- maybe not.
All this to say, that
1 - keep looking until you can find something you can address.
2 - make sure your seniors have people around them for most of their day - to notice changes and to help - isolation can kill.
3 - if you notice changes, get the affected person evaluated promptly.
In your shoes, I would be in touch with the facility social worker to describe to him/her mom's very sudden decline and your concerns.
If you are lucky (we were) there is a geriatric psychiatrist who attends others in this facility and can stop by to assess your mom and opine about what is going on.
(((((Hugs)))))