MIL Needs Help But Has No Official Diagnosis - We Need Doctor to Come to Her

ChiLexi

My MIL regularly does not recognize her family, has no short term memory and appears to be creating false memories, no longer knows how to do things like use a phone, is frequently hostile, thinks people live in her house, has wandered, no longer wants to bathe - I could go on and on - the problem is that she has always hated going to the doctor and has never received an official diagnosis for her dementia. We know she probably needs medication and home assistance (she has a live-in caregiver who is doing the best he can) - our most important concern is getting a doctor TO her. They are in Los Angeles. Ideally we would like to find a concierge-type doctor that could come to the house and start a care plan for her. Does this type of service exist? We keep running into road blocks because of her not having an official diagnosis (because she has no primary care physician), but she will not leave the house to see anyone. She would have to literally be sedated and hauled out of the house otherwise, and we want to try and keep things as comfortable for her and her husband as possible. Thank you in advance.

harshedbuzz

@ChiLexi

Most concierge physicians are PCP— Family Practitioners or Internists. Not dementia specialists. If she needs psychoactive meds, the specialist should be a geriatric psychiatrist. If you feel she needs a diagnosis at this point, they'll be ordering blood tests and imaging at a minimum to rule out treatable conditions that mimic dementia but are treatable. Given the wait lists for geripsychs (about 3-6 months in Philadelphia) or a neurologist (6-12 months) you're probably not going to find a way to make this happen without taking her to the doctor.

Unless she's Medicaid qualified and accepted into a waiver program for some in-home care, you'll be paying out-of-pocket which you could do without a diagnosis.

If she is a risk to herself or others, you could have her transported by ambulance to the ER with a plan to get an inpatient geripsych admission. Once she has meds on board, she might be more agreeable to medical appointments.

HB

eaglemom

Welcome. I'm so glad that you found us.

I have several questions, but will try to answer your questions as best as I can. With your MIL, have the things your describing slowly been coming on over years? Or is it sudden? I realize she's always hated to do to a doctor, many people are like that, for whatever reason. Does your FIL leave her alone? Meaning can he go get groceries, for example, and she's fine to be left alone.

What does she do all day? Sleep? Crafts? Watch tv? Pace the floor? Is she okay with you coming into the house? Is she bathing? Keeping up with her hygiene, as far as you can tell? I'm asking questions because that is the first thing a doctor will do - ask a multitude of various questions. Your FIL or you will need to know the answers.

I as assuming you ask her to leave the house for appointments, and she says no. Has your FIL tried a different approach? Possibly like we are going for a car ride and get a coffee / ice cream & come home. How does she respond? Will she sit in the backyard / front yard for any amount of time? Slowly getting her out of the house. I'm certain you've tried these things, but I have to ask.

As for physicians whom make house calls they do exist. Certain concierge physicians in my area (TX) do that, so I'd assume others do it also. I think you need a baseline of her general health prior to looking into a diagnosis, but I'm not a medical professional. My thinking is the doctor isn't going to just start treating her dementia, there will be an assessment of her over all health first. I will do some research and see what I can find for you. In the mean time, do call our Help line 1-800-272-3900 and ask to speak with a Care Consultant. They might be able to further point you in the right direction.

eagle

ChiLexi

Thank you both for your replies, which is very helpful.

To Eagle, thank you so much for the welcome. One of the reasons I am writing, from Chicago, is that my MIL refused to evacuate their house again (in Brentwood!) yesterday evening, and was extremely difficult while sheltering with my SIL during the first evacuation. I realized as I was in contact with her that my MIL seems to have declined a bit more since arriving there almost two months ago. I offered to try and do what I can from here while they deal with the fires going on in LA. My inlaws live there part of the year, just to clarify.

So her symptoms have been developing slowly over several years, but I do think that she seems to follow a pattern where she will quickly decline and then plateau for a bit until she declines again, and so on. She is 86. Until this year for example, we used to be able to cajole her that she doesn't live next door to her mother or that there are not people living in her house. She is now absolutely certain that we are wrong, and even when we try and play along, she just keeps talking about it, so it's not that she's satisfied if we "believe her" anymore. She can be quite angry, mean and uncooperative, which as we all agree, makes things really, really hard. She has tried to attack my FIL at least once due to not recognizing him. She absolutely cannot be left alone, and will wander. This was one of the main reasons they hired a caregiver, but this is not a "professional" dementia caregiver; he is amazingly kind and good at being her friend, but I think she will need something more soon.

As far as her daily activities in CA, I am not honestly sure (I will try and get more on that). When she was in Chicago she watched a lot of TV, snacked, and would go on walks with her caregiver trying to find her mother. She does like to be outside, but would sweep invisible debris or pull out perennials she thinks are weeds. She has always liked to be busy. She was a very talented piano player, and does play from memory on occasion. She is territorial about the house, doesn't like guests, and as I described, doesn't want to leave. So I don't think any sort of errand is possible, whatever the reason. With regard to hygiene, she does not like to bathe or wash her hair, which has been going on for a while but seems to have worsened in the last couple of months. I am also very concerned about the stress my FIL is experiencing, who is the same age.

I am going to share all of this with my SIL, including the Help line number - I think anything we can do to make things easier, like readily having the answers to these sorts of questions, will be helpful. Given what I have described, we have some hard questions to answer, such as whether she can remain at home even if they have an in-home aid? I would love to hear from anyone who has tried in-home care with a similar situation and/or successful (or not so successful) advice in general on in-home care or facility care. Like would she be happier in a facility where she doesn't feel as restless since she doesn't really seem to know where she is? None of us have gone through this with family before, so that's why resources like this and people who take the time to write like you both is so invaluable.

cdgbdr

What a difficult situation and made worse by the fires. I am in Ohio and there are visiting physicians and NP services although there is often a waiting list. You could also search for the concierge/boutique providers. With medical management she may be able to be managed at home. What a blessing to have a good in home caregiver. It is an asset that she has a supportive family.

harshedbuzz

@ChiLexi

Most folks here report that their LOs seem to lose ground in terms of function with any move. This is true for things like a vacation, moving into a facility of home of a family member, downsizing or even "snow-birding". My parents split the year between FL and MD for years; dad was OK with that for a time but as his disease progressed the settling in became harder on him. When my friend moved her mom to their newly built home she'd had built to provide mom with an in-law suite, her mom had a significant increase in confusion and lost skills.

Progression in the form of plateaus and steps is often associated with vascular dementia. The behaviors you describe are typically seen in later stages of dementia.

Some MAPs have a service that includes a yearly in-home wellness visit. My mom gets a yearly visit from a NP to screen for home safety, BP, cognition, etc.

HB

eaglemom

I just thought of something that is very 'out of the box' type of thinking, but it might work for your MIL. Amazon. I know I've seen they offer medical services that are virtual. I believe the fee was something very low, around $30. maybe. (If I'm remembering correctly.) That would at least have her seen by either a PCP or NP, and get a "formal" record started. Then they might be able to direct you further.

I know it sounds a bit odd, but I just wanted to share my thought.

eagle

ChiLexi

Yes, we have absolutely noticed that the dips I described have coincided with their travel back and forth as snow birds. She's been showing signs of dementia for several years, but the travel greatly exacerbates her symptoms and she also hates it. I'm a bullet kind of girl, so here's what I'm thinking:

• Picking a permanent location will be the best thing for her.
• Getting a PCP in their area who knows the healthcare environment in LA could be a good starting point (she should have a general doctor anyway!). Maybe the PCP could also help with next-step suggestions.
• As far as "official dementia" treatment, some of my relatives are skeptical that the medications will not work given where she is with the disease, and don't think subjecting her to that would be productive. As I mentioned before, she refuses to go to the doctor, for anything. She has most - but not all - symptoms described on this website for the middle stage. I have been told that they have asked around and have overwhelmingly received advice that it's too late for MIL to be treated. Is it worth putting MIL through "dementia treatment" at this stage?
• I think that there are going to be some very hard choices soon. My FIL still has all of his faculties and is the smartest person I know. My MIL is angry and behaving more aggressively and they are struggling between the idea of hiring a professional health nurse/aid to live with them OR find some sort of home arrangement where they can live together and she gets care. Would it be horrible to separate them where he can visit her? I think my FIL would absolutely languish in a retirement-type care facility. Is it awful of me to redundantly ask if there's a way to make this less awful?

Before I found this discussion forum, I read articles online, read a few books, and tried to talk to friends who have gone through this with one of their relatives. I thought I would get the most help from people I knew, but it couldn't be further from the truth. I've gotten shut down almost instantly, by versions of "yeah, went through that, it's awful, wouldn't wish it on anyone and/or hope I don't get it," etc., etc. I don't know if there's a stigma attached to this disease, or just that folks don't want to relive a painful part of their lives…which is why I so appreciate everyone's advice here.

And I love the Amazon suggestion! I think maybe starting that is the way to go. I had started writing this before I got that reply so I am looking forward to getting that moving. In the meantime, if anyone has some advice on my last two "bullets" I would love to hear from you. Thank you all again for your time, it is so sincerely appreciated.

harshedbuzz

@ChiLexi said:

• Picking a permanent location will be the best thing for her.
  
  This is likely true for both. TBH. One unintended consequence of my parents' snow birding was the lack of continuity of care. They had 2 PCP and a host of specialists in 4 states which led to a wack-a-mole approach to medical care. Things fell through the cracks— not just dad's dementia, but also his recurrence of prostate cancer.
  
  I'd consider FIL's wishes primary. This might sound cold, but there isn't much to be done for your MIL at this stage beyond medication. It's also useful to have them near the POA for dad. It's best if the POA is local and can have eyes on regularly. If dad has an accident or become ill, mom won't be able to advocate for him. You don't want that call from 1000 miles away that the caregiver is hospitalized in critical condition. Ask me how I know.
  
• Getting a PCP in their area who knows the healthcare environment in LA could be a good starting point (she should have a general doctor anyway!). Maybe the PCP could also help with next-step suggestions.
  
  This would be ideal. I lined my folks up with a university health system which offers most of what they needed and coordinates care easily. Setting up a patient portal for each allows me to communicate concerns without having to throw a parent under the bus during an appointment. You'll also want HIPAAs signed so docs can share information with you.
  
• As far as "official dementia" treatment, some of my relatives are skeptical that the medications will not work given where she is with the disease, and don't think subjecting her to that would be productive. As I mentioned before, she refuses to go to the doctor, for anything. She has most - but not all - symptoms described on this website for the middle stage. I have been told that they have asked around and have overwhelmingly received advice that it's too late for MIL to be treated. Is it worth putting MIL through "dementia treatment" at this stage?
  
  There are some older oral medications used for dementia. Some of these are indicated for moderate and severe dementia. The don't slow the progression of the disease process but do seem to help some folks in terms of daily function for a time. That said, they are not universally effective— I've heard 20-50% thrown around by doctors. And they do come with some unpleasant side effects, GI especially, for many.
  
  The newer infusion meds seem to improve function for at time (about an 8 month delay) for those in the early stage of the disease. The drug seems to work better for younger men, than women, the elderly and POC. Your MIL probably wouldn't qualify but even if she did, the evaluation and use of these meds is very medically intensive with routine imaging and infusions.
  
  Behavior is communication. Her hallucinations, wandering and agitation are likely distressing to her. There are psychoactive medications which could help dial that back for her and improve her quality of life greatly.
  
• I think that there are going to be some very hard choices soon. My FIL still has all of his faculties and is the smartest person I know. My MIL is angry and behaving more aggressively and they are struggling between the idea of hiring a professional health nurse/aid to live with them OR find some sort of home arrangement where they can live together and she gets care. Would it be horrible to separate them where he can visit her? I think my FIL would absolutely languish in a retirement-type care facility. Is it awful of me to redundantly ask if there's a way to make this less awful?
  
  I'm team give each parent the setting they need. If you can pull that off in the same place for a time— great. But sometimes their needs need to be met in different settings. Mom kept dad at home a very long time. Longer than I would have liked. She paid a price physically for this choice and it has limited her lifestyle in stage 8. Mine, too. One thing that happened when she did place dad was that she was able to revert to the role of loving wife rather than the shower, medication, hydration police. They were both happier with that.

Before I found this discussion forum, I read articles online, read a few books, and tried to talk to friends who have gone through this with one of their relatives. I thought I would get the most help from people I knew, but it couldn't be further from the truth. I've gotten shut down almost instantly, by versions of "yeah, went through that, it's awful, wouldn't wish it on anyone and/or hope I don't get it," etc., etc. I don't know if there's a stigma attached to this disease, or just that folks don't want to relive a painful part of their lives…which is why I so appreciate everyone's advice here.

There does seem to be a stigma. Losing one's history, agency and essence of self is terrifying to those who would recognize it happening. There's also a tendency of some who've been through this hell to be reluctant to revisit it. Perhaps it is too painful for them or that they'd rather recall the LO pre-dementia. But there is also the desire of most folks to want to protect the legacy and dignity of their LO. It might feel disloyal to get into the gnarlier aspects of what dementia does to people. That's different here where folks sometimes need to get the details of their initiation into The Blue Glove Club off their chests in a bid to feel less alone.

HB

ChiLexi

Wow, HB, this is absolutely amazing! I feel like your situation was remarkably similar to ours, and thank you so much again for sharing. You brought up so many excellent points that we also need to consider, like them being close to the POA (which they are now) and not forgetting about my FIL. If you think it would be helpful, I'd like to provide an update here about how things go. Unfortunately, my family in LA is still very much dealing with the wildfires. Once that calms down - hopefully sooner rather than later - I am glad that I have all of this helpful info that I can show them.

If a "What to expect" type of book on caring for those with dementia doesn't exist, I think the people in this forum could really contribute to something extraordinarily helpful. Just a thought.

H1235

If you need some general what to expect king of information, I would recommend you look under groups (in this forum) then new caregivers. The things I have found most helpful have been “ Understanding the Dementia Experience” and the staging tool. Good luck.