"First we are children to our parents, then parents to our children, then parents to our parents, then children to our children"

July 13, 2011 12:07 PM

Who knows best for an aging parent?

My mom's memory underwent a steep decline a few years ago and then leveled off. Her short term memory is very poor, but otherwise mental faculties are good; she remembers normal events from years ago, and given the facts can reach reasonable conclusions, but won't remember that she's mentioned something several times in a conversation (for example).

At the advice of her doctors and friends, at the beginning of the year, my sister and I moved her into a retirement community. She wasn't super enthusiastic about the plan and kept procrastinating, but frequently agree that it was probably a good idea.

Since moving in, she complains regularly that she is homesick. Sometimes she states outright that she wants to move home, other times she seems resigned to living at the new community (which she admits is very nice, but not home). Two weeks ago she told my sister that it was okay to sell her house. On Monday she left me a message saying she wanted to move home.

We've made a lot of effort to get her to like the new place-- I visit at least weekly, my sister makes a six hour drive up at least once a month, her friends tell her that it's much better for her, we've hired someone to come and keep her company and take her out, the community has events every day, etc. Nobody seems to think she should move home but her. We can get a home aid to monitor her safety and pill reminders, but the primary concern is that she will become isolated without other people to socialize with.

Legally, she has complete self-determination. If she called up the movers tomorrow and told the community, "I'm out of here," nobody would stop her. As a practical matter, that's highly unlikely. She needs my help to handle the logistics, and I won't do anything without my sister being on-board (she is currently opposed to the idea).

So my question is, given a charge with somewhat diminished mental faculties, should I listen to her unevenly articulated desires or the opinions of her friends, family and doctors?

(This is not one of those questions that's going to have a clear and easy answer, but I'm hoping to gain perspective from people who have had to make similar decisions.)

posted by justkevin to health & fitness (17 answers total)

This is a second-hand recommendation, as I haven't read it yet, but my wife just had the book A Bittersweet Season: Caring for Our Aging Parents--and Ourselves recommended to her.
posted by fuzzygerdes at 12:21 PM on July 13, 2011

There may be some ways to achieve a middle ground here.

It sounds like her main concern is the distance from friends she may have been seeing more regularly in her home. Would it be possible to arrange a way for them to get together more easily? Maybe having a standing order for a driver to take her to them or vice versa? Have a standing lunch date with old friends? Something like that. It's hard for anyone to meet new people in a new place, and if their or her mobility is limited, it can feel quite isolating.

It sounds like you are all also still not entirely clear what the extent of her cognitive impairment vs. ability is. It may be useful to have her complete a neuropsychological evaluation that can provide a more detailed examination of what things she is able to do do and what things may need support. For example, how is her reasoning vs. how is her short-term memory vs. how well can she carry out day to day tasks. With that information you can make more detailed decisions about what level of care she needs and what she may still be able to do for herself. It can also help in making decisions about whether or not there are particular parts of her care that you and/or your sister would be better to take over. For example, she may be perfectly competent to make medical decisions for herself, but may benefit from your having power of attorney for financial decisions.
posted by goggie at 12:41 PM on July 13, 2011 [1 favorite]

I am in my second round of this. (Background: I am my grandparents caretaker, my parents are only intermittently involved - which is a whole other Oprah) We just moved my 2nd grandmother into assisted living a month ago. She hates it. So did my other grandmother a decade ago. Neither of them could take care of themselves anymore and neither my husband and I nor my sister and her family could take them in.

Here's what I've done in these situations. I've listened. I can only imagine that if I were my grandmothers and had put my hands over my ears for most of my life when talking about plans for my later years, that I would be scared shitless and miserable in a new place where I didn't know anybody and everything from the food to the smells to the noises to the neighborhood were new. Sure, they could have made better plans but they didn't and so I have to meet them where they're at. I tell them that it must be scary. I imagine it's like the first day of Jr. High school when you suddenly have a locker and have to change classes and you're slightly chemically disoriented in addition to being actually disoriented. I do exactly what you're doing and visiting her often, calling often. Making sure the activities director knows her.

should I listen to her unevenly articulated desires or the opinions of her friends, family and doctors?

tl;dr: Her unevenly articulated desires are all about fear. I'd be scared too if I were her. Speak to that and try to empathize the best you can. Also, xanax, def. for her, perhaps for you too.
posted by Sophie1 at 12:58 PM on July 13, 2011 [2 favorites]

What defines home for her? Does she have all of her "stuff?" Her couches, art, etc? Does she have a certain level of independence to do her own cooking and cleaning if she wants? These are the things that may be important to me. Of course, I am 31.

That said, my mother, who is in her late 50s, has fairly advanced dementia. She can't quite do everything for herself anymore, but she was super offended when I started stopping by once a week to clean the house (she lives with my dad, who is able bodied, but works full time). She feels able to take care of the house on her own (even though she very much isn't). On days that I am not there, she goes to Adult Day Care (the worst name in the world!! Instant negative connotations), which she dislikes, but at least she isnt home alone all day.

I really think that our parents' generation views the whole retirement community/assisted living/getting older and needing help thing as prison, and it is really hard to change that idea. Seriously, I would love to live somewhere (or go somewhere, in the case of Day Care) with a bunch of my peers that had fun activities planned every day (a dorm for the senior set!)- but there seems to be no way to spin it that works. My mother would rather watch car auctions on tv because she can't figure out how to change the channel than go do crafts and play bingo with other people.

So, I don't have a solution, except to play it up as much as you can. Deep down, I think your mom knows she should be there, because where there is a strong enough will, there's a way. Depression, by the way, is very common among elderly people, and cognitive dysfunction can be a symptom and a cause. I encourage you to have the neuropsychological evaluation mentioned previously.
posted by LyndsayMW at 1:02 PM on July 13, 2011 [2 favorites]

So my question is, given a charge with somewhat diminished mental faculties, should I listen to her unevenly articulated desires or the opinions of her friends, family and doctors?

Who is SHE going to listen to? Maybe she'd be more inclined to listen to an old friend or her doctor than her children. Enlist help from people she respects.

But honestly, moving sucks at any age, especially when you were reluctant about it to begin with. It takes time to get settled in, and at her age it probably takes a lot longer than it would for you. How long was she in her last home? Probably quite awhile. If your short term memory is going, it's hard to give up the familiar, because your surroundings are good cues for your long term memories. Be as empathetic as you can and don't dismiss her concerns.
posted by desjardins at 1:13 PM on July 13, 2011 [1 favorite]

Does it make sense to thank her for moving and to emphasize how good it makes you feel to know that she's safe and well cared for where she is? It IS a sacrifice to move and in a way the move was for you kids and the other people who love and worry about her.
posted by small_ruminant at 1:15 PM on July 13, 2011

Has she been evaluated by a doctor for signs of dementia or Alzheimer's Disease? That short-term memory loss is a red flag. AD patients will remember their childhood homes, family vacations of years gone by, the names of their old pets, but they won't remember whether or not they ate lunch or if they've already told you X and Y. This is probably part of your mom's current waffling between "I'm happy at the retirement home" versus "I want to be in my own house." My Dad was in a similar situation late last year/earlier this year (he passed away at age 87 in May). He'd suffered a heart attack and was in the ICU for a few days and then moved to the rehab wing. Anyway, we eventually had to put him into a residential care home and due to short-term memory problems his viewpoint seemed to change by the half hour - first he liked it there, the nurses were pretty and took good care of him, he had a nice view out the window etc. Then, suddenly, he'd ask us "when am I going home?" and "Why are you keeping me here?" and we'd hear from the folks visiting his roommate that "your Dad asked us how much room we had in our car and could we drop him off at home". We'd then explain to him that he had to stay there until he "got better" and he'd accept that, relax and be OK for a while. Then the process would repeat.

It doesn't sound like your mom is in the position to make any permanent decisions about the future of her house/belongings. If, after she is medically evaluated and it appears that she may never be able to live independently again, then you can probably start considering selling her home and using the funds to pay for her extended care. However, I would wait and see what the specialists say, just in case there is any chance of mom moving back home and being cared for by a visiting nurse or home health care aide. She'll lack the socialization of the care facility, but being in the familiar environment of her own home would probably be more of a morale booster and comfort to her.
posted by Oriole Adams at 1:32 PM on July 13, 2011

It must really suck to not have much short-term memory and be in a completely new place. Where you're relying on your short-term memory to remember how the new place works.

That doesn't mean that you should move her back. To do so would be incredibly stressful for everyone involved. I mean, if the benefits of moving her back are huge then it would make sense, but if it's evenly balanced then once you add in the mental and emotional cost of actually moving house again, it's not worth it.

Ethically, she is probably competent enough to make her own choices. But I don't know whether that means you have to enable them.

Also, perhaps it's not helping because there is sort of the option of moving back if her house is empty. Someone I knew in a similar situation to yours rented out her mother's house and I think that helped. The mother hadn't lost the house, but she couldn't think she could move back in at the drop of a hat.
posted by plonkee at 1:40 PM on July 13, 2011

Oriole Adams' suggestion of an evaluation is a good one. Do you have power of attorney for health care? Does she have a living will? It's much harder to get documentation for this stuff in place when someone is no longer competent and she may be more willing to have you take on the power of attorney to pay bills and the like so she doesn't have to hassle with it than if it's couched in terms of her being unable. It's a hard situation to be in on all sides.
posted by leslies at 2:01 PM on July 13, 2011

I totally sympathize with your situation justkevin and I appreciate the comments left so far. I moved my mostly “with – it” 91 year old mother back into the assisted living facility I moved her out of a few years ago after her unceasing complaints and while I have guilt as only a mother can lay on – I am also pretty confident that my mother is getting her basic needs met and has help that is only a pull of a cord away. Although my mother does have most of her faculties she is much like a child and so I take her whining as I do my eight year old’s. Unltimately you must listen to your heart. Do not let her complaints lessen your resolve in doing the right thing.
posted by lkfwilson at 2:07 PM on July 13, 2011

We moved my grandmother, who has vascular dementia and Alzheimer's, into a residential home last year. My grandmother's dementia is mostly evidenced by short-term memory loss of the kind you describe (can reach correct conclusions from facts but will not be aware that she is saying the same thing over and over), though also with some lack of inhibitions. She was extremely unhappy at moving. The home told us that this was often the case and that she would get over her unhappiness. She was there for five months and didn't get over it. In the end we had to move her home because of her unhappiness and because she started being aggressive to other inmates. She is now at home with a live-in carer.

So I wanted to say firstly that perhaps you could investigate this for your mother. It is very expensive, though.

Also I wanted to say that it's worth trying to think ahead, difficult though that is. If you think that your mother is so fixated on the idea of going home that as she deterioriates her behaviour may become difficult to manage in residential care, it might be worth considering moving her home. On the other hand, if you think that she is likely to deterioriate to the point of being unable to cope at home in the fairly near future, you might think it would not be helpful to try to move her home and then at some point move her back again. If she hasn't had an assessment of her faculties she probably should, and following this a specialist might be able to advise you about the likely progression of her ageing.

If the primary concern around being at home is social isolation, you might be able to do something about this - involve local charities or churches, or pay people to call in if that's feasible. But you may find that her loss of short-term memory makes her not want to meet new people.

Also, if you are getting a lot of contact from her about moving home and this is difficult for you to deal with, remember that you do need to look after yourself and have strategies in place to try to get a break from contact with her if necessary. Short-term memory problems are very stressful for family members to deal with, and it is quite possible as others have said that this is an indication of a more serious problem such as dementia.

Re speaking to the fear, as others suggested - for my grandmother this just infuriates her. Although her feelings clearly are difficult for her to manage, she definitely does not want to discuss them with anyone. So you may find you have to stick to more pragmatic stuff.

Oh, one other thing - we talked to the residential home a lot about my grandmother's interest and career, so they could talk to her about things she knew (not sure if it helped, but in theory it should have). Depending on the setup of your mother's residential community, it may be worth making contact with staff and making sure they know ways of engaging with her.
posted by paduasoy at 2:17 PM on July 13, 2011

@goggie: Most of her friends are just as able to visit her in her new location as home, some live in the retirement community with her, so it's not about friends. It's more about the location where she spent 40 years.

I neglected to mention that she lost her husband (our dad) last year. She seems to dealing with that in a healthy way-- she had a "normal" grieving period but has gradually come to accept that he's gone while still missing him. But she'll probably always associate him with the house.

Regarding her mental impairment, I think we have a good idea what her current capacity is and that it doesn't seem to be deteriorating rapidly (she and I meet with her neurologist twice a year and he administers a standard test looking for changes).

I have POA because she has difficulty with the finances. Her medical care is coordinate with myself, her PCP, neurologist and VNA.
posted by justkevin at 3:05 PM on July 13, 2011

(rather than responding individually, I'll add additional info that several responses have asked about)

She has not been diagnosed with Alzheimers. There is a test that could be done, but her neurologist said the result, positive or negative, would not change her treatment, so we've decided to skip the test since finding out she had it would be very stressful for her (and us).

She sees a neurologist twice a year, her PCP annually and a doctor specializing in the emotional health of seniors every few months. She's had an MRI in the past year. Diagnosis: possibly early onset dementia. Not clinically depressed but on anti-depressants anyway.

We've tried to make the new place as "homey" as possible. All of her possessions are there. She has a kitchen and can cook if she wants. Her friends do visit her there.

Also, thank you everyone for the suggestions, this is very helpful.
posted by justkevin at 3:20 PM on July 13, 2011

A few points:

With respect to well established and permanent short term memory problems, this is very likely an indication of incipient or early stage dementia; a thorough evaluation with a neurologist is called for and will confirm whether this is the case or not. Depending upon the particulars, the neurologist may be able, if it is indeed dementia, to determine the type, and may have some sense of the likely progression of it.

Regardless, short term memory problems pose significant safety risks. For example, if she sets up something to cook on the stove, will she remember it or remember to turn the stove off when finished?

Memory considerations aside, as someone once said, old age "isn't for sissies", and presents significant challenges to both the aged and their social networks of families and friends. And whether we like it or not, at some point, the judgment and decisions of the appointed caregivers should prevail for the welfare of the elders (as well as the peace of mind of the caregivers).

With respect to this latter point, it is worth considering something a lawyer told me some years back: the courts are generally very reticent with respect to reducing previously functionally competent adults to the legal equivalence of minors with the result that the legal standard of competence is something of a joke, and doesn't converge with, or complement that, of a reasonable person. As a consequence, "unevenly articulated desires" may have no practical value beyond expressing an understandable if unrealistic wish. In addition, individuals less intimately involved with an elder's day-to-day issues (which individuals usually but not necessarily include non-relatives as well as family members living far away) are less likely to be in possession of the knowledge to express truly useful opinions, and as a consequence may not have all that much of value to add to the caregiver's decision making process. In short, decisions for the elder's care when that elder is no longer reasonable competent should be those of the caregivers as informed by research and consultation with the relevant professionals.

For whatever it is worth, I will observe that, from what you have said, it seems like you and your sister are on the same page with respect to the situation confronting you. This is a huge stroke of good luck (in a situation not particularly lucky) and one which, from what I've read and been told by those in the know, is sadly rare. (I've dealt with the flip side, and it makes a bad situation massively more difficult and unhappy.)

With respect to figuring what to do, among the parties with whom you should consult -- if you haven't already and apart from doctors -- is an attorney specializing in elder care. In addition to being able to help with all the legal considerations (e.g., powers-of-attorney, health care proxies, living wills, wills, Medicaid issues), a good one will have a good sense of the range of social services in an area and will probably have connections at assisted living facilities, nursing homes and other service providers.

Another potential source of help with the decision making process is something called a "geriatric care manager." I didn't have much luck with the one I hired to help my sister and me with a similar problem, but YMMV.

I notice also that you are located "Boston-ish." There is an organization in Boston called Beacon Hill Village -- here -- that may be able to help with the "stay or go home" decision; if you are not in their geographic range, they may be able to refer you to a similar organization in your area (i.e., there are many such organizations following its model throughout the country).

In the interest of full disclosure, I am the caregiver / power-of-attorney / business-of-life manager for both my mother and her brother, my uncle. She is still at home (with a situation that is evolving as I type); he is in a nursing home. To say that the experience has been, and continues to be, interesting is to put it mildly. So you have my empathy.

Oh dear this has turned into a long post. I apologize for the dissertation; memail me if you want more potentially useful / maybe worthless input.

Good luck!

P.S. Make sure you and your sister look after yourselves: you can't be of much help to your mother if your own needs are not being met.
posted by cool breeze at 3:28 PM on July 13, 2011 [1 favorite]

I'm a caregiver to my eighty-two-year old dad who lives with me in the family home. So you have all my sympathy. There are a lot of us out there! I won't add to the excellent (especially Cool Breeze's) posts on legal and living issues as they make the point better than I could.

She's recently widowed - has she been screened and treated for depression? My widowed dad improved immensely when that was treated with Celexa. Dad's neurologist calls depression "pseudo-dementia" because depression in elders mimics dementia. Treating that depression can help matters greatly even when there is real dementia at issue.

Lack of exercise also contributes to mental decline. Is there a safe way your mom can get exercise and fresh air?

Can she care for a pet? If she's a cat person, and someone can provide backup care and make sure the cat is being fed and cared for, kitties make wonderful, affectionate, really quite low-maintenance companions. I recently acquired a shelter kitty and my dad really likes her (he's not responsible for her care, though).
posted by Rosie M. Banks at 4:43 PM on July 13, 2011

I really think that our parents' generation views the whole retirement community/assisted living/getting older and needing help thing as prison, and it is really hard to change that idea.

If you had spent a significant time volunteering in such a place, especially a lower income assisted living facility, you would probably not ever want to live in one. If you have severe mental and physical impairments, you can literally be trapped in your own body, suffering from perpetual loneliness despite being surrounded by people. The few hours a week that your loved ones visit are the only bright spots in your life if you're so disabled you can't even read, or see and hear the television well. I remember spending time with a man who had such poor hearing that I had to shout at him to hold a conversation. Can you imagine two people with such an impairment trying to converse regularly and become friends? The man always tried to get me to stay longer than my 2 hour volunteer session, practically blocking me in with his wheelchair because had no one else to comfortably converse with. Furthermore, when you're 80 and just want to be around everything that reminds you of the life you've lived as you begin mentally reviewing your personal history, you might not be so keen on moving to strange place and making a bunch of new friends with whom you may or may not have anything in common. They really are like prisons for millions of elderly Americans, justified by our generation since we don't have a strong culture of taking care of 3 generations within the home. Perhaps the experience is vastly better in the ritzier retirement communities not sponsored by federal dollars. Not that any of this is necessary relevant to the OP's question, but the idea that we have the same emotional needs when we're old that we have during our early and middle aged years is flawed.
----
OP, have you looked into HCBS services? Most states have a Medicaid sponsored
program that provides a certain number of hours of caretaking per week (some programs offer 24 hour assistance), in the home. Whether it'd meet the needs of your mother would really depend on the severity of her cognitive decline. Consider getting her more thoroughly evaluated to see if her "unevenly articulated desires" are what she truly wishes.
posted by sunnychef88 at 5:30 PM on July 13, 2011 [1 favorite]

Familiarity is crucial with memory loss. In addition to missing home, the unfamiliarity of her new home adds to her confusion.

A couple of suggestions:
1. Her visitors should be enthusiastic about how beautiful the surroundings, how helpful and nice the staff, how lovely her room is decorated!
2. When she expresses a desire to return home, ask her what she misses.
3. Speak with local professional guardians (appointed to assist the cognitively-challenged) to reassure yourself. Ask them about the difference between the "best interest of the ward" standard vs the "substituted judgment" standard.
4. Know that when she makes a friend or two, it may make a HUGE difference.

Good luck. She's safe. Hopefully she'll get happier about it.
posted by Jezebella at 6:31 PM on July 13, 2011