Parent looks to be developing dementia.
December 10, 2016 4:06 AM   Subscribe

I believe my 73-year-old mother is developing dementia. Now what?

I believe my 73-year-old mother is developing dementia.

My father passed away recently and in the meantime I've been staying with my mother. I didn't realize until I started living with her just how bad she'd gotten. She has serious problems remembering things and frequently cannot find the right word to express herself. She keeps misplacing things. She has trouble understanding things in general. It's all very frustrating for her. She has always been highly dependent on my dad, and now that he's gone, she's lost.

I live an hour away and initially thought I would spend weekends at her place to get groceries and help her out, but I don't think it's a good idea for her to be left alone for five or six days at a time; she'll be alone too much. She can still physically take care of herself and her home but she's very isolated. We have no family nearby. I have no siblings. They have some close friends a few miles away, but it's not the same as family that would take regular care of her. Nobody but the close friends have stopped by in the time I've been there. She also doesn't drive.

I'd like to move her into my home, but I'm afraid it's going to be too distressing for her. First, it would take her away from her home, neighborhood, and friends. Second, my house is nowhere near as nice as her house. (It really isn't.) I also live in a small town and have to do some driving to get anywhere. She currently lives in an affluent, well-developed suburb with many amenities nearby. All I could offer her would be the presence of me and my spouse to keep her company. She has a fragile temperament anyway, and I'm afraid the move to such a different environment might cause a rapid deterioration in her cognitive abilities.

I thought of getting her into something that would put her with people for at least a day or two each week, but I don't know what. There are several problems. First of all, English is not her first language. Her accent is thick and she doesn't always understand what someone says to her in English. I also notice she mumbles a lot more than she used to; I often find her difficult to understand. Sometimes she forgets who she's with and speaks in her native tongue instead of English. My parents didn't socialize, except with their close friends, and it was my father who led the way. She's not a go-getter. My father always led and she always followed.

She's got an appointment with her primary care physician in February regarding suspected diabetes. I'm going to call and see if we can get an earlier appointment. Do I ask to speak to the physician ahead of time and explain what I've seen? Would he schedule a different type of appointment to evaluate her?

What then? What do I do for her (or for myself)? I'm alone in this, and I'm frightened. I'm married but have no other family to turn to help me with this.
posted by La Gata to Health & Fitness (15 answers total) 3 users marked this as a favorite
The most important thing is that she gets medical attention at the earliest possible opportunity. The symptoms you describe could reflect anything from depression that might be treatable with medication through to something that requires urgent surgical intervention. You simply can't take steps to deal with the prognosis until she has a diagnosis. Call her doctor today, if you can.
posted by howfar at 4:09 AM on December 10, 2016 [16 favorites]

Yes, earlier appointment and explain what it's for. First things first. After she sees a doctor, then you can start making plans. I know it's scary and there are lots of thoughts racing in your mind, but that's the first step and there's no point in getting ahead of yourself. Lots of support from over here.
posted by whitewall at 4:37 AM on December 10, 2016 [4 favorites]

It's also worth considering that her spouse just died. This is one of the major life-altering events that are going to throw anyone for a loop. Before you conclude that these changes are permanent, give your mom time and space to grieve -- AND plenty of support, because the loneliness and isolation you observed are no doubt very real.
posted by chesty_a_arthur at 5:04 AM on December 10, 2016 [5 favorites]

Make sure she signs something allowing you to speak with her doctor about her. Call her doctor's office and make sure you're listed as the person with whom her doctor can share your mother's medical information and get whatever form you need your mother to sign if you're not already listed that way. Can you accompany her to the doctor?

Would she consider coming to stay with you for a few week or two? She could consider it a visit, not a permanent move. That way you could make sure she's eating properly, getting enough rest, taking her medications.
posted by mareli at 5:05 AM on December 10, 2016 [2 favorites]

I'd just like to say that I've noticed for quite a while (years) that she struggled to find the right word and had problems with her memory, in addition to having difficulty understanding things. I just didn't realize how bad it had actually gotten. My father always handled everything when I visited so none of this was as obvious before.
posted by La Gata at 5:16 AM on December 10, 2016

You've considered moving yourself and your spouse in with her? An hour isn't great but if you needed to drive for awhile you could do it until you found arrangements in Affluent City. Unless your spouse is anchored to your current location by family or an immobile job (you're farmers?), you might all be better off...
posted by the christopher hundreds at 5:19 AM on December 10, 2016

You definitely need the medical evaluation to determine whether or not what you believe is actually correct. You probably want to determine if/how to obtain a durable power of attorney, and then explain the situation to her physician and ask how to make an evaluation happen soon.

IF what you believe is correct, it is unlikely that you'll find a good solution moving her into your home. Her condition might be addressed with medicine, but this is mostly a delay of the inevitable.

Years ago, after my grandfather passed away, my immigrant grandmother moved to an apartment but found herself isolated and lonely, so my folks moved her into a nursing home. This was before senior housing or assisted living were "things." She had no particular need of the medical services, and she was fairly sharp. It turned out to be an excellent move, as she found a nursing home that had both staff and residents of her nationality. The staff loved her as she was very energetic and helpful. Over the next fifteen(?) years, until she passed away, she slowly lost most of her English and showed other signs of deterioration, but she was in an environment where she had familiarity, good care, and lots of other residents that shared her native language. She was also much closer to the rest of the family, so visiting was easier.

Modern senior living communities often have assisted living options, which can include things such as meals in a common dining room, housekeeping, group social activities including craft classes, transportation to local shops, on-site banking, a staff nurse to assist with medications, and other features. Moving is always going to be a traumatic event, but a move to a new location with significant benefits in terms of support structure could be worth it. If you can find one that has other residents that speak her native tongue, that could be significant.

Otherwise, you might be better off seeing if you can move in with her, which would likely prove an easier situation to extract yourself from if things become untenable.
posted by jgreco at 5:31 AM on December 10, 2016 [7 favorites]

I'm so sorry for the loss of your father, and that you're now dealing with these worries about your mother. I'm a neurologist and often see people for cognitive concerns. This is not medical advice, but here's some thoughts about what might happen in the initial workup.

The most important thing to keep in mind is that cognitive impairment / dementia is a symptom , in the same way fever is a symptom. The first step is to figure out what's causing it. In an older person, vitamin deficiencies (B12 in particular), thyroid dysfunction, various infections, even depression and grief can be playing a role. These are often called the "reversible" causes of dementia. On the other end of the spectrum are the progressive dementias, like Alzheimer's disease, vascular dementia, frontotemporal dementia. Sometimes (actually more often than not) there can be a mix of different things piling on top of each other, and it's important to address each one.

Definitely see if you can get an earlier PCP appointment; tell them you're worried about your mother's cognition and her safety at home. Go with her to the appointment with a list of concrete things she's struggled with -- names, following a conversation, trouble reading, getting lost, trouble sequencing a task, change in behavior, all of these are informative as to what the cause might be. She should get bloodwork and brain imaging. She should also have cognitive testing.* Some PCPs, especially if they see a mostly older patient panel, are comfortable doing the cognitive testing themselves, but sometimes they refer out. Don't let the PCP dismiss these concerns as "just aging," especially if the word-finding problem has been going on for years (when she was what, mid 60s?)

If she does end seeing a neurologist, be prepared for a long appointment. Again, you or your spouse -- someone who can provide additional history/clarification -- should attend the appointment with her. The neurologist would review everything the PCP's done (bring copies of labs or imaging if you can because sometimes that stuff gets lost in the ether of fax machines; MRIs/CTs on disc rather than just the paper report would be ideal!) do a detailed neurologic exam looking for any additional signs, do/repeat the cognitive testing. They may be able to give you a diagnosis at this stage, but if things are still muddy, she might be referred again to a cognitive neurologist, someone who has done fellowship training in dementia. These folks are often housed in a large university setting and are active researchers, so it's great to have someone like that on your/her team going forward. Treatment would depend on the underlying cause. I will say that the one thing that is consistently shown to improve cognition, regardless of cause, is aerobic exercise, so if it's physically safe for her to be up and moving (even something as small as going for an evening walk) she should do it!

In terms of more practical advice, it might be good to start looking into medical and/or financial power of attorney. Laws vary by state, but I believe you need a formal diagnosis to complete the forms. Finding things to keep her active and in her community would be great -- is there an immigrant group she could join, where language wouldn't be as much of an issue? Or hiring a companion/aide to come by the house daily or every other day to check on her, get her groceries, chat with her for an hour or so? Senior centers or day centers can be helpful and often include transportation to/from the center as well as field trips to museums or the grocery, and social activities like bingo, music, etc. This might be tough for someone who is naturally pretty introverted. In terms of moving her to your place, you're right that she might have trouble adjusting, but also I imagine that being around her remaining family would be reassuring. Independent living/assisted living facilities like jgreco mentions are also really good particularly if she needs additional help with cooking, meds, etc but be aware that they are usually out-of-pocket unless she has long-term care insurance and can get really pricey/expensive.

* If at all possible, the cognitive testing should be done in her native language. The Montreal Cognitive Assessment is often used these days because it comes in multiple languages. If the doc doesn't speak your mother's language, though, they might need to use an interpreter or recruit a family member to translate their instructions, which can get kinda complicated and harder to score.
posted by basalganglia at 5:36 AM on December 10, 2016 [12 favorites]

I was estranged from my parents for some time, so my mother's never actually been to my home. I'm positive my mother would hate it, however, and be very disappointed in it. The house is cluttered, small, the basement is full of workshop items, the furniture is old, etc. Her home is well-tended with tasteful furniture. If she moved in we would take the furniture and have room for all of us, but I know she wouldn't be happy going from a nicer home to a worse one, and I'm afraid it might affect her mentally.

I would be happy if we could move into her area permanently but my spouse absolutely loathes the suburbs. I've known that about him since the day I met him. Also, he has an enormous workshop with heavy equipment on our property, and moving is not an easy or inexpensive option for us.
posted by La Gata at 5:40 AM on December 10, 2016

Depending on where you live there may be additional resources. Adult day care, senior companions, help in the home, all exist. Depending on your moms income (and assets excluding her home) she may be eligible for assistance through the state. For example, in IL the aging services have income limits greater than Medicaid, so it is possible to get free adult day care or homemaker services without actually having medicaid.

Get the power if attorney signed ASAP while she is still able to sign it.

If there are any churches, or community groups full of people who speak her language, it may be worth paying a taxi to take her to and from the free groups for socialization.
posted by AlexiaSky at 6:14 AM on December 10, 2016

Please consider getting power of attorney if you're aware your mother can't keep track of things, especially if it was your father's role to keep the bills paid and the finances working. This will also mean that nobody will be able to prey on your mother with charges for fake repairs or other such scams people try on vulnerable older people.
posted by zadcat at 7:11 AM on December 10, 2016 [3 favorites]

Google "elder care" plus your state/province. There should be local resources you can turn to for advice about what's available in your area. They will be able to give you general advice and tell you what your options are for finding various types of care, such as delivered meals, checking in once in a while, visits from nurses, rides to appointments, etc. You should also consider finding an elder care attorney who can tell you how to handle the financial aspects of all of this, including what is and is not covered by your mother's insurance.
posted by chickenmagazine at 7:15 AM on December 10, 2016

Many good suggestions here, especially the ones recommending that you get Power of Attorney. All I have to add is that you should get on this quickly. As dementia progresses it makes the victim paranoid and suspicious.

My mother-in-law let her mother's dementia progress until she was unable to drive safely and now her mother accuses her of trying to put her in a home any time they go to a medical appointment. She says any potential caregiver is stealing from her. She distrusts everyone. At one point she lost her house keys and a locksmith was called to let her back into her house. Now she thinks that the locksmith is coming into her house and hiding things from her.

Try very hard to get things arranged for her before she gets to that point.
posted by irisclara at 11:28 AM on December 10, 2016

This is only relevant if your mother's health isn't quite as bad as you fear - - could you and your husband build/have built a pretty, tasteful, elder-friendly, addition onto your house? To furnish with her taste and furniture?

Normally moving an ailing parent into a more rural (?) place breaks a lot of social ties, but if she's not getting visits from friends now, not so significant. You might be looking at a long-ish period in which she mostly needs a comfortable sitting room and you need not to be worn to a complete frazzle.

Also, in the long run, a room + bathroom suitable for someone with medical needs can be very useful. Wide doors, roll-in showers, good insulation and separate thermostat, view of plants if possible.
posted by clew at 1:09 PM on December 10, 2016 [1 favorite]

I went through this with my mom a couple years ago and have several suggestions -

- As far as power of attorney, it is much easier to get for medical decisions and much harder for financial decisions. You can see an attorney now to get POA for medical decisions. File the POA with her primary care doctor and carry a copy with you always. For financial stuff. just get her to add you to her bank account. That way you can know what is going on with her finances, can pay her bills for her (keep an eye on this. It is something she is likely to forget) and it doesn't require a physical, documentation, etc. You just go to the bank with her and talk about it. This assumes, of course, that she is coherent enough to talk with the bank officials and not raise concerns about financial abuse. Do this before her dementia gets worse.

- What does your mother want? Probably, she wants to stay where she is. You can support this by getting her signed up for "Meals on Wheels" or another service like it. Someone will bring her a meal daily (and keep an eye on her in the process.) You can also pay to have a care giver come in a couple times a week. They can clean, prepare food, take her shopping, take her to doctor appointments, do laundry, etc. Perhaps you can find a care giver who speaks her native language. This would probably be quite comforting. Moving her into your home is the nuclear option and unlikely to make her or you and your family happy.

- Down the road you can change this plan as her needs become greater. Maybe she will need assisted living or a nursing home. But for now, help her live in the least restrictive environment possible.

- Watching my mom's dementia slowly eat away at her mind was distressing, and at first I spent a fair bit of time looking for doctors who could "fix" her. But the conclusion I came to eventually is that dementia often cannot be "fixed." It's what happens to brains that are old. Don't ignore the possibility that medical issues may be resolved and make her more cognitively aware, but there is also the possibility that it won't get better. Keep an eye out for a UTI. They can really make older people behave in really bizarre ways.

You are in a position now where you will begin to speak for your mom the way your dad did until his death. Saying, "Mom, how can I help you live the best life possible" and then doing that will be a burden but you will not regret it.
posted by eleslie at 6:04 AM on December 11, 2016

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