Mother's memory loss
August 5, 2012 6:54 AM   Subscribe

How to talk to my mother about her encroaching dementia?

She's getting more and more forgetful and overwhelmed by the world. I'd like to encourage her to get evaluated by a neurologist but I have a couple concerns:
1. This is really hard to talk about! She knows she's losing her memory, and often talks about it and gets sad about it, but when I try to engage more deeply about it she changes the subject or avoids talking about.
2. I'm not really sure what the value of a medical evaluation is here.

I recognize that it would be good to rule out non-Alzheimers causes of dementia, but assuming it is not a larger medical problem that needs help, I guess I'm not sure that there's much value in getting a diagnosis. As I understand it, the medications for this are not very effective. I'm concerned that turning this into a highly medicalized situation will increase her feelings of powerlessness without actually offering her benefit.

At this point I think she's still OK to drive etc, so am not trying to get her license taken away or anything.

I'm looking for advice about how to communicate with her about this painful and frightening topic, and also experience anyone has had with this that might help me decide how to counsel her in terms of what sort of support I hope she'll seek.

Sorry this question is a bit all over the map. Obviously, it's emotional for me too.
posted by anonymous to Human Relations (13 answers total) 18 users marked this as a favorite
In the UK, the benefits to getting a diagnosis would include:
* Ruling out treatable causes
* Being able to take Aricept (donepezil) to slow the course
* Having cardiovascular or other risk factors controlled if necessary
* Access to services such as speech therapy that have referral criteria
* Access to third sector support (Alzheimer's Society etc)
* Eligibility for things like having carers coming into her home
* Planning for the future

If she doesn't want to talk about it then you can't make her, but if it is dementia then there will come a point when she's not able to take care of herself. It would be a lot easier for everyone if she has already made decisions about what will happen when this time comes - will she come to live with you? Will she go into 24 hour care? How will that be paid for?

Talking about it is difficult. Maybe it's easier to focus on specific situations that are difficult and try to problem solve about those. Forgetting medication -> daily pill box, forgetting meals -> set alarms or get a meal delivery service, forgetting appointments -> maybe she needs to hire someone to escort her. If you talk about the everyday stuff then maybe she will be more comfortable talking about the big picture.

Good luck, it's a really difficult situation.
posted by kadia_a at 7:31 AM on August 5, 2012 [1 favorite]

We waited too long with my Grandmother - she had gotten into car accidents and had several medical emergencies before we moved her to a nursing home. She has lost a great deal while there, and part of me is certain that if she'd moved earlier, she would be coping better. The fact is that elderly people often do not cope well with a move late in life.

Looking back, I wish we'd worked collaboratively with her while she was at a higher functioning level to move into a place with progressively greater care (so she could start in a single apartment with a kitchen and gradually get more support as she needed it).

I can't suggest how to have the conversation. This is incredibly hard. But the positive results for her and for all of your family, in terms of increased quality of life, are hard to overestimate.
posted by arnicae at 7:36 AM on August 5, 2012 [3 favorites]

I went through this with my mother. She no longer drives, get very confused about important dates, often has to have things repeated to her, etc. I never actually had a "talk" with her about her dementia. I thought there would be no point. I have found that taking her to the doctor for something else and mentioning that she seems "forgetful" or "confused" are like code words that the doctors pick up on. None of these doctors have ever used the word "dementia" with her and tend to downplay her symptoms in front of her (for which I am grateful), but then the doctor and I will have a separate conversation about strategies for coping, etc.

Yes, get her to the doctor to see if he can help her with her forgetfulness. But you are right that there is often little that can be done in the form of medical interventions. The interventions will be physical such as limiting her ability to hurt herself (leaving the stove on, driving and getting lost, etc.) and things to help her remember important events (lots of calendars and reminders.) I can tell you that with my mother, she has passed now beyond the point where her dementia bothers her and has entered a state where she is calmer and more accepting. I think this is probably due to more dementia (or maybe less blood flow to the brain) but it is a blessed state for all of us.
posted by eleslie at 7:37 AM on August 5, 2012 [1 favorite]

There are several forms of dementia that are accompanied with cardiac problems and can be helped/slowed by meds, much more effectively than the common Alzheimer's treatments you hear about. My grandmother had Lewies-Bodies dementia and I wish we'd caught it so much earlier.

Dittoing what others have said about being able to talk about plans and changes while she's still cognizant. We had to make care home plans, and by that time, the only thing grandma could offer was resistance and insisting on a home that was far, far away from everyone (because it was close to her childhood home and that was all she remembered). It ended up harder on the whole family for a very long time.
posted by ninjakins at 7:49 AM on August 5, 2012 [2 favorites]

There are some rarer causes of dementia, other than Alzheimers, like pernicious anemia (Vitamin B12 deficiency). This is treatable and can be diagnosed by a simple blood test. I urge you to get her checked out.

Also, listen to arnicae; this was my experience with my mother as well and the advice is exactly what I would say.
posted by gudrun at 7:53 AM on August 5, 2012

I don't know how to start this conversation with her. But do you have others in the family/close friends who could be good allies in this discussion? She will need to feel safe here while you are bringing up some difficult things that may make her feel threatened.

That said, it is very important that you figure out what to do for things like Powers of Attorney, etc. That will also be a very difficult conversation, but very necessary so you don't need to go down the road of bringing competency hearings, etc. into the picture. That could be REALLY hard.
posted by Madamina at 8:34 AM on August 5, 2012 [1 favorite]

Is her husband alive? If he is, you'll want to work through him. If not, the following will be less useful. We're currently going through this with my dad, and there are some things I wish we'd done differently:

Most importantly, although my folks have spent an ungodly amount of money over many years for a long-term care policy, they 'share' the policy benefits and have only one year of inpatient care between the two of them. How is a spouse supposed to determine when their spouse is within a year of death? This is cruel (and in my opinion, should be criminal) and has kept my elderly mom from utilizing their inpatient benefit at all. A shared policy with at least 3 years inpatient plus in-home care would be more realistic.

Mom uses an in-home caregiver three days a week that's paid by the policy, but she's a homebody and with in-home care, she's never able to be at home alone. She needs alone time to recharge, and she's not getting that in her own home at all. When she's at home and if Dad's not asleep, he insists on being in the same room with her (even though he can't remember her name or that she's his wife).

Secondly, although Mom and Dad talked about it when he was in the early stages (and he told her to "put me in a home when I get too hard to deal with", which she won't because of the above issues), I wish we kids had insisted on family discussions to get educated about dementia and especially to locate community resources available early on. Mom spent a long time not wanting to talk about it at all, and to this day she won't talk about anything having to do with Dad's condition or her struggles with it in front of him (he's quite advanced now) and continues to insist on talking on speakerphone with him present... We've decided it's partly a characteristic of the World War II generation & a type of denial, and that there's not much we can do about it. She's recently started calling us from her cell phone when she's away from Dad and will talk about things then. But we make suggestions of things she might want to consider and ideas for helping her, and are careful to let her remain in control since she's still mentally sharp. With both Mom and Dad, it's a delicate balance between respecting them as adults and your parents and making sure they're safe and cared for.

My mom has been reluctant to attend a support group -- another quirk of the older generation, I think. So we kids have become her support group (none of us lives close - and two of the three are out of state). My sis and I have divided up the week and make sure we call her on "our day" to be sure she's ok and has what she needs. We've started flying home for a week once a month (we switch off months) and have cleaned and repaired their house over the last few years, but mostly we're there to offer her support and a loving ear.

If your mom is single, I think I'd talk to my siblings about staging a type of intervention: "Mom, we see you have these symptoms and we're worried about you. Let's find out if it's something that can be fixed." And then make the appointment and take her to her doctor. You should attend with her and tell the doctor what you've observed. If she refuses to go or to let you attend, YOU make an appointment and talk with her doctor alone or on the phone. He/she will help you (although he probably won't be able to tell you anything about her medical condition unless she signs a release form). If it turns out to be dementia, spend the next few months finding out her preferences - does she want to live with one of you when she gets bad, or be put in a home, or ?? Do more listening and asking questions than talking.

If she's married, in short, I think the best you can do is be loving but persistent with him: "Dad, ___ must be hard for you. Would you like me to see what resources are available that we might be able to tap into? Let him take the lead and pray a lot. His life is going through tremendous change too and he's under a lot of stress... This is the time that you become the caregiver to the caregiver. God bless -- it's a cruel disease, and I sometimes think the lessons it brings are for the rest of the family, not for the patient.
posted by summerstorm at 9:03 AM on August 5, 2012 [1 favorite]

"I know that you've been very sad about your forgetfulness, you've made that clear. I want to take you to the doctor; if there's a solvable medical cause, we need to find out so you can be happy again, and if you're resigned to the idea that nothing can be done, we still need to find out for sure so that we can plan for our future. I've called your doctor, and s/he can see you on these three dates; which would you prefer?"
posted by davejay at 10:40 AM on August 5, 2012 [4 favorites]

Oh honey, memory loss and dementia is really hard for every family that has to deal with it. Some families choose to respond without naming the problem, but i think that really makes it harder to get the right support. I think it's smart for both of you if you can get a name for what's happening.

Additional reasons it's worth getting a proper diagnosis from a doctor because:
1. you'll both be a position to get more specific support from the Alzheimer's Society or appropriate org'ns and those have been shown to have a Positive impact on quality of life for both of you
2. Drugs can slow progress of some illness, especially early on
3. YOU arent qualified to assess your mom's ability to drive & You probably don't want your mom to cause an accident or harm others. Alzhimer's is not just about forgetfulness, but also ability to judge distances/physical relationships in space and a bunch of other changes in how the brain behaves.

How to have the Talk:
1. Identify for yourself in advance what your goal is: probably doctor's appointment for assessment, maybe agreement to let you talk to her doctor.
2. List for yourself what concerns you, but don't expect her to recall incidents like you do, or agree with your assessment of what they "mean"
3. Decide if you should ask a husband or sibling to join the conversation (yours or hers)... Will they be helpful?
4. Remove any potential distractions like TV or Radio
5. Be calm. State clearly that you're concerned. Emphasize you love her & will help her through this
6. Listen. Let her talk (or not). Try really hard to stay calm and not to yell at her.
7. I really think a proper diagnosis should be your main goal.
8. Debrief about how you feel with someone else. It's okay to be upset by all this.
9. Followup with doctor and/or mom a few days later.

If the direct approach doesn't work You can always write aletter to her GP specifying your concerns & why you have them. That way GP doesn't have to breach confidentiality but gets info necessary.

Best wishes.
posted by Heart_on_Sleeve at 11:24 AM on August 5, 2012 [2 favorites]

We've been going through this with my mother the past few years and my heart goes out to you. It's so difficult to have these conversations but I agree that you need to talk to her and get her assessed by a professional.

About 5 years ago my mother started talking about being overwhelmed and unable to remember things. It was causing her great anxiety and she was sure that something was physically wrong with her. She had a full evaluation (I sent a letter where I gave my impressions) and they said that her memory and mental acuity was normal for someone her age (early 70's). What was not normal was her sometimes overwhelming anxiety and general symptoms of depression. She's always been high-strung but now certain aspects of her personality seem to have kicked into overdrive and this has been difficult to manage. Also, it's difficult to tease out the depression from the anxiety from the general stress about aging.

I'm telling you this just to say that you mom might have issues other than dementia that could explain her symptoms. Getting her to accept going to the doctor and being honest with him/her about her concerns is the first step. Good luck to you both.
posted by victoriab at 12:12 PM on August 5, 2012

I have not yet read the previous responses, but please force this issue. Make her an appointment with a reputable neurologist right away. It's hard, but it's worth it. I'll refrain from telling my story (pm me if you are interested), but suffice it to say: we waited way too long, the medications more than help, and getting the right kind of care (with a diagnosis) improves everyone's lives significantly.

Please don't wait. Dementia and Alzheimer's are unpredictable. Things can go from livable and manageable to scary and untenable in days. I am not exaggerating or saying this to be scary- its worth it to get her checked out.
posted by LyndsayMW at 8:25 PM on August 5, 2012

The other reason to get a diagnosis is to find out whether it is one of the forms of memory loss that tend to be inherited. You and your other family members probably would like to know.
posted by lollusc at 1:59 AM on August 6, 2012

To be clear, people are recommending that you take her to the doctor: this means you should go sit in the exam room with her, hear everything the doctor says and recommends, contribute your observations if you feel like she's not describing the situation fully/correctly, etc. This may feel to you or her like you're being insulting; the last time you were in an exam room together she was probably holding your hand while you got school vaccines. Stand strong, do this with love.

Treating this as a medical issue may make it easier to talk about. I understand your concern that she may feel powerless with all her problems laid bare like that, but ignoring them won't make it go away either. Medicine can help. The doctor has definitely seen worse cases, and will have useful advice. In fact, s/he's probably worked with this kind of conversation many times before; maybe talking with the doctor beforehand will help you know how to have this conversation with your mother. It sounds like you're not very confident in the usefulness of medical treatment; more information might give you a stronger opinion. I'd like to think that you'll be convinced that the doctor can help her, but whether that turns out to be the case or not, you'll be better informed and more certain of what outcomes you want from the conversation you need to have with your mother. Knowing what you want almost always makes difficult talks easier.
posted by aimedwander at 7:26 AM on August 6, 2012

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