Remember, dementia get’s worse over time, and vascular dementia progresses in a “stair step” fashion. This means she can have a sudden worsening of dementia which often levels out. I suspect my mom, with a sudden worsening of her dementia, had a vascular component. Additionally, many find a worsening of dementia following anesthesia. Sometime, this improves but may take 3 months. I think this is less likely if the individual has a baseline impairment. I think how much pain is a contributing factor is unknown. But think about ourselves, when we are in pain, we are distracted and it’s hard to focus. Someone cognitively impaired has difficulty making the “switching” required to change focus.
You are correct. A demented person is unlikely to learn how to use an assistive device. I think “wait and see” is difficult as you need to assure your mother is taken care of now. This is the problem with elder care. The stress of “wait and see” and not being able to make plans is overwhelming.
So many variables; no crystal balls, yet many caregivers eventually face the generally downhill course of advancing age, particularly when coupled with memory loss.
Wait and see can also mean transitioning a person with ever diminishing cognitive capacity, inadvertently increasing the challenges of adapting to a move, as well as potentially making it harder to develop relationships with new caregivers. It is hard to know where the “sweet spot” is and many of us have been there. In my experience, once you start to wonder if it’s time, it usually is. YMMV. I was glad the staff at the memory care SNF where my father spent his last 4 years knew him before he was as compromised as he was in his last 10 months and also glad that he could take advantage of the staff’s expertise and activities.
Very sympathetic to all the nuanced judgement calls along the way. One can only do their best with what is known at the time. All the best to everyone.
I know it wasn’t the anesthesia (which surprised me). I do think there was a step down. I also notice a lot more of using the wrong word, or combination of words in addition to even shorter memory and confusion.
I am excited about a place I am looking at on Monday. geared entirely to memory. It’s sad when my mother’s friends in AL tell me she is struggling with bingo and has to sit next to the staff person.
But safety is the main concern with her alone. I can only sleep so much on her loveseat and she almost fell anyway!
This forum has helped me stay out of the abyss. It’s a nice spring day in NE, and I am back to art and tai chi. These things help me while I watch and wait, but I am concerned that the wait is not helping HER!!!
travelnut you make good points and the other reason for my delay is that the staff at the AL and residents as well have known her so long…she was independent and driving when she first moved in.
Anyone else struggle with an elderly parent whose cognitive/memory status is still very good, yet has large physical limitations paired with living alone (in a city where none of her children or relatives live in) in a very large house which requires a lot of maintenance? She really should be in an AL situation but refuses to leave her home. Arranging for care is constant for her adult children (most of those hits to help quit after a couple of days because she expects them to do everything, not just care for her). She will be out of funds soon, so we will likely be picking up our share of her and her home’s heavy care needs. Some believe forcing her to move will literally kill her. Others believe she must be moved as this is an accident waiting to happen. She has kind of always been a diva, but now she is a diva on steroids and wreaking havoc on her kid’s and grandkid’s lives. She robo-calls everyone, all day, every day, with her demands. If she can’t reach one of her kids, she starts calling/testing/instagramming her grand kids (who live in a completely different city from parents and grandma) to enlist their help in locating the missing person (who is at work and just unreachable). The whole thing is nuts and we don’t know what to do.
Her mental health status isn’t very good! Not sure if that has been true for a long time or if it is related to some early dementia. Constant calling is a sign of some anxiety but also can be related to dementia. In our area, there is a geriatric psychiatric unit that can help with a situation like this, and could refer your mother to assisted living.
In my experience, many people are in assisted living involuntarily, though not in the legal sense. But with your mother’s personality, it sure must be difficult to even contemplate
Can you get a professional involved somehow? A geriatric specialist or social worker? There are consultants in the field as well.
If she won’t go to an AL I imagine she won’t move to a more manageable apartment or condo. You could tell her that downsizing is all the rage!! Seriously, the expense of paying for help in an unmanageable situation is her call until she runs out of funds, but then it becomes your call.
Protective Services sometimes ends up being involved. We ended up telling our mother that we, her kids, are liable if she hurts herself! We still use liability to explain all kinds of requirements by us, therapists and AL. She seems to get that.
@cypresspat, I notice you say her cognitive/memory status is very good, and that she has always been a diva, and (by implication) now she’s an extremely demanding diva. I’m in the mental health field and I’ve had a lot of clients who come in because of the strain of dealing with parents who sound a lot like her. I obviously can’t diagnose your mother but I will say that many of these clients have parents who fall in the narcissistic personality category.
Has she has a full cognitive assessment with, say, a geriatric psychologist? Would she submit to one? The results could be very helpful in determining the direction taken. Because there may be some cognitive deficits that you are unaware of. And if there is a lot of anxiety, medication may help.
A couple of suggestions though:
First, can you give the grandkids permission to block her on their phones? This shouldn’t be their problem. They can still unblock her and call her when they wish to speak with her.
Can you work with your sibs enough to make an “on-call” schedule? Someone who checks in with her each morning and evening, while the rest of you block her? If she knows she will get a call at particular times (planned in advance according to the schedule of the caller, and written down and given to your mother), then maybe she won’t make so many other calls. And it will give the rest of you a break. Really, only one of you needs to be on duty at a time.
I sincerely doubt a move will kill her. I’ve seen many people be terrified as they set limits with their demanding parent, and if they hold their ground, the parent eventually grows to accept the limit. Better to move her before she runs out of funds, in my opinion. I also think none of you needs to be held financially or emotionally hostage to keeping her in this unsafe situation.
I’m sorry you are in this very difficult situation.
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Some believe forcing her to move will literally kill her. Others believe she must be moved as this is an accident waiting to happen.
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In my experience, the siblings need to work together and agree on a plan of care. Such a plan would include limits such as @calla1 mentions. Probably keeping her home, without caregivers, is not a viable solution. Even if she isn’t cognitively impaired, it seems she lacks good judgement. I have a patient in a similar situation and adult protective services is involved and the state is talking about taking guardianship over the sons who are enabling her to stay in an unsafe situation.
My FIL wanted to move into AL for several years before they actually did; MIL refused to move. While she was in the hospital and rehab after a stroke, he made the decision. Now, she can’t see leaving.
We knew that they wouldn’t accept caregivers coming into the condo, or they’d be so annoying that the cg’s would quit. They reluctantly accept help now, and it’s been a bonus that family can be there and enjoy them w/o worrying about meals, meds, hygiene, etc.
@calla1, wow, thank you! You suggested things none of us had thought of! Perhaps being on this long slippery slope has dulled our ability to look at this objectively, but our taking ‘shifts’ and the rest blocking her makes a ton of sense! My young twenties daughter burst into tears when we told her that we are trying to get her grandmother to move to a local AL facility. My sweet caring daughter felt that her grandmother would ruin her life. Ugh.
The irony here is my husband IS a clinical psychologist (not geriatric). He is the one struggling the most with setting limits. I really think there Is something cognitive going on, though. While one could argue that her inhibitions are removed and she is just a more strident version of her old self, I think she is unable to make any rational judgments at all anymore. Her kitchen is stocked as if she is expecting the sixth fleet to show up at any time. She literally never stops talking (it is like having the radio on) and will ask her grandchildren to research trips to Thailand for her to take them all on. Her treat! She can’t get the mail from her front porch, never mind fly to Thailand. This is not anywhere near normal. But since she is 91, no one sees the point in any sort of assessment other than validating what some of us think. She definitely won’t do that voluntarily, either.
You are so kind to shed some light on this. I really appreciate the support. It is so different from others’ experiences I hear about. She isn’t in and out of the hospital, nor does she have any memory issues (unless it is convenient!). She has just decided she is royalty and we are all her ladies in waiting. Unfortunately there aren’t many crowned jewels to sell anymore and we are all exhausted.
And you have me the idea that my husband should talk to someone who specializes in this area so he can feel better about forcing a move. That makes perfect sense . You rock!
More than one of us has mentioned protective services. My mother is similar to yours in personality but has dementia. Still, she understood when I told her that we, her kids, might be liable if something happened to her and that the state might get involved. This idea has helped us get certain things done.
In general, I have made up the “third party principle,” meaning I get someone else, a professional, to accomplish something. That means I got a rehab to take her license away, a PT to take her cane away, etc. etc. Again, it sounds like you need to get a psychiatrist or a social worker involved.
I finally have invoked proxy and Power of Attorney but don’t tell my mother-she would freak. I can get a lot done behind the scenes with the proxy and P of A. Can you ask a lawyer or physician if a P of A and proxy are possible given your mother’s mental health issues (and possible cognitive decline)?
It is also possible that you might be able to get her to a facility (or geriatric psych. hospital unit) because she is a danger to herself.
Is there a reason you have to answer all her calls? Does she leave messages? My mother calls me constantly and I have learned not to answer. She used to call my kids if I wasn’t answering but has stopped now that she is more used to me not responding. I have gradually weaned her from her expectations in terms of phone. I check messages to make sure that none of the calls aren’t emergencies (actually checking only the most recent message accomplishes that!).
Are you seeing a therapist? I think anyone impacted by this could use a therapist to help with the situation, how to endure it but also how to change it for the better.
Your mother has way too much power over everyone. At the same time, she is in danger living alone. It seems like some sort of intervention is going to be needed and the therapist could help sort that out.
@cypresspat , I’m so glad my comments were helpful. You sound absolutely exhausted.
I love what @compmom above has said as well. Your mother has been running the show and she needs someone else to take charge, even if she’s unable to know how to ask for that.
I’m glad your husband is a psychologist, as he will have connections and skills to work with her. But family is tough! I’m a psychologist too, and dealing with my own father just about sent me over the edge. It’s so hard to be objective with our own families. Which is why we need to reach for outside help.
In my office, I’ve sometimes had sibling groups come in to talk about strategies for handling their parent. We usually do two hour sessions on an as-needed consultation basis. They find an objective third ear very helpful, both for the suggestions I’m able to give them and for the handling of common family dynamics between the sibs (the one who wants the inheritance vs the one who wants best care for mom, etc.) It might be very useful for you all to have a group consultation to get on the same page.
Just before my dad was diagnosed with dementia he would call me all the time. If he had a doctor’s appointment he would call them 100 times to confirm. If I was taking him somewhere at 9AM, he would start calling me at 2AM, and ask where I was. If I didn’t answer he would keep calling. If I answered we would have a long discussion about yes, it is AM, but it is still the middle of the night and not time to go yet. Even when I answered he would call again an hour or so later.
@cypresspat - what a challenge and lots of good advice here. Does she have a psychiatric diagnosis that pre-dates the more recent escalation of problems? Does she sleep well? Agree that a geriatric neuro-psych evaluation could be a good place to start and hope the family can divide duties. A skilled clinician will help you get to the bottom of it. Regardless of the diagnosis, your assessment of cognitive deficits is likely accurate.
It can be hard for family members who have always bent over backwards to accommodate what is seen as a formidable personality to re-group and help steer the elder care ship. All the best.
My mother would have passed a psych test with flying colors. I, too, categorized her as “competent.” She handled her own bills, investments, health issues, was uo-to-date on world affairs, etc. No test of her alone would have revealed what, in fact, made her so difficult for us.
When pressed, she’d say, “It’s my life.” Well, fine, but if something did happen to her, guess who would be holding the ball?
She finally did relent and move from CA to the east coast, within miles of me. This was after a heart attack and her doctor talking sense to her. And she was just as uncooperative and difficult. In ways, you need to examine just how much you can endure, when at our ages, we can see the writing on the wall and they refuse to.
Calla1, thank you again! You are so right…I think his being a pro makes it extra hard for him. He sees so much pathology in those he works with that in a weird way, his situation seems minor compared to the horrors of what he sees everyday in families. But he forgets the cumulative effect this has had on all of us. Including him.
The three sibs are very rarely in the same city at the same time and none are close to each other emotionally. They generally agree on most things, but all have different levels of anger over the whole situation. We were together for a family event recently and it was the first time everyone realized how she was orchestrating constant contact with 15 different people at once with her phone, even though she was ten feet away in the next room. As everyone’s phones started ringing in succession, the lightbulbs went off. We have a problem, Houston.
@travelnut, thanks. She has not had an assessment or formal diagnosis. All have always suspected that she has ADHD. Getting her out the door for pretty much anything is literally impossible. She was 30 minutes late for MY wedding, but she is also very narcissistic. She felt that one of the sleeves on her dress was a millimeter longer than the other, so her making 200 people wait in a sweltering church was justified in her mind.
I think that recent developments have convinced all of us that not all of the light bulbs are on any more. But even with a diagnosis, she will not cooperate and probating her is the only option. She truly believes that her family members love hearing from her 10 times a day. So the only way to stop that is to block her. The spouses of the sibs (I am the youngest of that fun group) have sworn a blood oath to contact each other if we are on the brink of divorce as prevention. So we are finding ways to cope with this mess.
We have also told our kids that they need to make sure we are settled in a place where we can spend the rest of our lives BEFORE we are so entrenched there is no moving us. We don’t want to do this to our kids. But then again I probably won’t insist that my kids name their daughters after me either. I am funny that way.