Experience with dementia?

September 28, 2005 1:21 PM

Advice on dealing with a relative with dementia?

Some of you might remember my earlier question about relocating 1800 miles to be with my grandmother in her final months (and thanks again to the kind souls who responded). Well, I did it -- and thanks to an unusual turn of events at work, it wasn't nearly as big of a leap as I imagined. Now, I'm down here in Texas, and my grandma is much worse off mentally than I realized.

Yesterday, my first full day in town, I spent 6 1/2 hours with her. She recognized me, though she spent a lot of time introducing me to people as her daughter and asking me things like "how's your son?" (I'm childless.) Those kinds of things I can deal with.

What's harder is how to deal with and respond to the nonsense that comes out of her mouth. Some of it is just off-the-wall, untrue stuff (like her rambling stories about "those boys" who keep breaking into her room and touching her dress) and some is literally gibberish, like she is getting tongue-tied and stumbling over words and forgetting things mid-sentence. She stares at me and seems to expect me to understand. Yet, she's feisty enough not to appreciate me nodding my head and saying "okay" or similar responses. Sometimes she touches my face and tells me I'm beautiful and an angel. Other times her eyes narrow and she tells me I'm just like my father (believe me, not a compliment in her mind). She's bound and determined that we're going to "pack up and go" -- to her old apartment, to the store to get some bread, or to some destination she can't articulate, though we will never actually be able to take her anywhere. Getting her to remain in her wheelchair or in bed is a constant struggle that never ends (evidently, restraints are now illegal, even when it would harm the patient to try to stand). She demands money constantly to tip the sneaky aides and custodians who "help her" with stuff -- in other words, who do their job. She's also very close to deaf, thanks to the nursing home that's lost her hearing aids and won't replace them, so it doesn't help that she hears probably 10% of what I say to her and comprehends maybe 10% of that. Finally, she mumbles, so I can hardly hear her.

I realize this comes across more as a vent than a question, but I'm just seeking advice on (a) how to deal with my grandma's failing mental faculties, and (b) how to deal with the stress of being with her when it's pretty much a wholly unpleasant experience. Any suggestions are more than welcome.

posted by justonegirl to human relations (20 comments total)

Oh, man, you're great. The best thing to do is to remember how great you are - how unorthodox it was for you to make this decision and how courageous it was - and to remember that even if she only feels that way for a few minutes, those moments when she says you're a beautiful angel are her moments of gratitude and relief that you are there. And that's why you came.
posted by By The Grace of God at 1:34 PM on September 28, 2005

(that's an answer to part b of your question, by the way. I don't know much about part a, as I was a child when dealing with my mother who had dementia and other mental distortions and didn't deal with it very well anyway.)
posted by By The Grace of God at 1:37 PM on September 28, 2005

The most important thing to remember - in my experience - is that no matter what horrible thing she says or does, it is not an intentional act and you should not overwrite your good memories with these very difficult ones. This is not your grandmother, I am sorry to say. I lost two grandparents well before they actually died, and it hurt. Be strong.
posted by Optimus Chyme at 1:45 PM on September 28, 2005

Talk to her doctor and tell them exactly what you told us. She sounds just like my grandfather did - there are medicines that will help take away her paranoia, which make both her and you much happier. Unfortunately, quite often doctors for the elderly don't pay much attention to patients that don't have family members around to pester them and tell them exactly what is wrong.

As an aside, for the hearing aid situation with the nursing home, you might want to check and see if Texas has an Elder Law association that you could file a complaint with. The way they handled that was BS, and your grandmother does have rights.

As for dealing with her, it sounds like you are doing about all that can be expected. My grandfather was very similar - always talking about going home, mumbling incoherently and getting upset when you don't understand. It is extremely difficult. Just try to talk to her without talking down to her. Does she (or you) have any photos? Go through them with her and ask her about things and people. Sometimes my grandfather would have periods of lucidity where he would tell me awesome stories that he had never told me before, and I learned a lot about him, history, etc. If nothing else, looking at photos seemed to make him happy.

Also, if you look at pictures, a least if she is being kind of incomprehensible, you can fake it better when you know what topic she is trying to talk about. Since she can't hear very well she may be able to focus better with something to look at.

Another tip if she is having problems with the bed - the nurses at my great grandmother's nursing home eventually had to put the mattress on the floor to prevent her from getting up and hurting herself (its impossible for them to get up off the floor, so its effectively a restraint). It was slightly more work for the nurses in the morning to get her into a wheelchair, but it at least kept her safe at nighttime.
posted by gatorae at 2:09 PM on September 28, 2005

Background: I'm primary carer for my parents. My 90 year old father suffers from Parkinson's Disease and dementia. My 85 year old mother, while mentally fully capable, is far too frail to care for him thanks to a combination of rheumatoid arthritis and osteoporosis.

First, remind yourself your grandmother is someone you care about. There have been situations where my father has driven me to distraction and left me feeling I just want to walk away... that's when I need to remind myself that I do care.

Second, have some form of activity that takes you away from your usual environment and that occupies your attention so you don't fall into brooding over things your grandmother has said or the way she's been behaving. My favourite means of escape is riding my bicycle - it gets me away and the exercise improves my mood immensely.

Finally, what Optimus Chyme said. If she's like my father then she'll likely have no short term memory (and one of the most wearing things of all is answering the same question ten times in as many minutes) so try and let the hurtful things slide.
posted by arc at 2:26 PM on September 28, 2005

It sounds like you could use an online community of other primary caregivers (not that this isn't a good place to come too). Can anyone suggest any?
posted by footnote at 2:29 PM on September 28, 2005

no advice at the moment (will write some later.) Just wanted to say you're still my hero.
posted by filmgeek at 2:31 PM on September 28, 2005

My grandmother has dementia and my parents are her primary carers. Despite the fact that they are both nurses (now retired), they hire someone to spend time with Grandma for a couple of hours a few days a week. It gives Grandma some variety (although we can't really tell if she even realizes or not) and it gives my parents their own mental health break. You are doing a wonderful thing, but you don't need to do it alone.
posted by arcticwoman at 2:48 PM on September 28, 2005

First off, thanks for the update! I'm sure I'm not the only one who's been hoping to hear about your journey. So sorry to hear about your grandmother and her confused mental state. It's very disorienting to have a relative with dementia. There's some way that we need to see ourselves reflected in our parent's and grandparent's eyes, and when we don't, it's sad, strange, and infuriating interesting.

I haven't read any of them personally, but I know there are a number of books and memoirs written by people in your position. Someone I know found this one and this one helpful, but I can't vouch for them myself. Is there a bookstore there where you are? Maybe you could browse through some such books and see if any of them speak to you?
posted by jasper411 at 2:58 PM on September 28, 2005

Or perhaps there are services for the elderly in your area - animal or human visitors that volunteer their time, so you don't have to pay.
posted by lorrer at 3:07 PM on September 28, 2005

Most nursing homes have a speech-language pathologist on staff. Assuming s/he (most likely she) is not completely frantic and overloaded, she should be willing to talk to you about communicating with your grandmother. She may even be able to put her on her caseload and you and/or your grandmother could have regular sessions with her. SLPs in nursing homes usually have expertise precisely in this area, but too often this expertise goes unused because there is no family member around to bother communicating with the dementia patient. Therapy for these patients usually involves indirect treatment, like modifying the environment (e.g. putting up lots of signs/calendars/labels) and teaching family members how to deal with the mood swings, memory loss, paranoia, etc.

Please write (email's in my profile) or post a follow-up and let us know how things are going. And bless you for spending time with your grandmother during this difficult-to-put-it-mildly time.
posted by kmel at 3:25 PM on September 28, 2005

My dad has the beginnings of dementia and exhibits behavior similar to your grandmother's, but less extreme. Some tactics I use or have seen:

When Dad goes into something unpleasant (he's still pretty nice to me, but likes to refer to his roommate and fellow residents as "nothings" and other lovely things), I firmly say "I don't want to talk about that" andmove on to another topic. I have a few set things to talk about, such as a) What have you read lately? b) Here is a funny story about my cat, c) Isn't it nice that it's warm/terrible that it's cold - things that I know he'll respond to, so I'm not searching for a topic to fill the void, since I'm not so great at small talk.

The wanting to go somewhere thing I see a lot at the nursing home where my dad stays. The most effective way I've seen staff dealing with this is distraction: here is a cookie! Can you help me fold napkins? But if you go outside you'll miss dinner, which is starting right now, let's go there! and so on. This is a tough one, as it is a real fixation for many of the residents. But diverting that restlessness into another activity, besides leaving, seems to be the best way to deal with it. If your grandmother is able/interested in any crafts, this might be a good way to
redirect that energy.

In general, I find that having some set or even scripted responses to the stressful and unpleasant behavior allows me to take it less personally - I just load up the "Dad's talking shit about his tablemate again" plan, and don't have to stress about how much it sucks and what do I do NOW?

When not actively dealing with a behavioral crisis of some sort, I try to ask a lot of questions: about my dad's past, his interests and family members, etc. Since there's a communication gap due to the hearing aid (ugh to the nursing home on that one), I second gatorae's photo suggestion. Maybe focusing on something positive would keep her occupied and help her feel the connection to you that she seems to be looking for.

Good luck - you're doing a great thing. In the midst of all this, remember that it's okay for you to look out for yourself and your own mental health as well. In fact, it's essential.
posted by hilatron at 3:30 PM on September 28, 2005

First, you are totally excellent for doing this. Everyone should have such caring family members.

My grandfather has dementia and was in an assisted living facility (which was great), but he kept falling. As you said, restraints are illegal so they couldn't really make sure he didn't fall. He's in a nursing home (due to falling) and they are able to use something in his bed (legally) to keep him in. It's also hooked up with alarms so they know if he's about to get out.

We've put signs up for him everywhere (put your break on, before you get up) for his wheelchair and it's helped a bit.

My mother is his primary caregiver and has had to have his medication adjusted a few times. There are things they can give them to make them less upset. I don't mean making them sedated and drooling, but in a subtle way. Maybe her primary care physician can help with that.

My grandfather, luckily, has gotten very sweet (he was always nice, but not this sweet). But he still knows if you're just yessing him. And he often talks about windows and doors and getting into certain rooms for his papers--things that don't make a lot of sense. I don't know how best to deal with it except to give yourself time away from her. I know you're there to be with her, but you have to weigh how much she gets out of it and how hard it is for you. Burning yourself out completely in one week won't help you or her -- I'd say to ease into the time you spend together.

I'm more than happy to get names of medications, etc for you from my mom. I know how hard this is. You can email to jen at the domain name in my profile.
posted by jdl at 3:35 PM on September 28, 2005

Bless you indeed for doing this. I moved my mother to the Seattle area three years ago (her idea, thank goodness) for similar reasons.
As her dementia has worsened, here are some things I've learned:
- "I want to go (home, out, etc.)" usually this is a response to a new (or stressful) situation. As hilatron said, diversion is your best tactic. A non-commital response ("hmmm..." "Oh, really?"), and then a change of topic usually does the trick. My mother stopped saying this once she was fully oriented to where she is (takes about 6 weeks, ymmv)
- The "nonsense" is also known as "word salad" and is quite distressing. Mother has just started this, and I had some success in asking to explain again, please? If that just confused her, I changed the topic.
- See if the place where your Grandma is living can put pads by her bed if you are afraid of falls. They really can help.
- Make sure you visit often, and solicit feedback from the aides/nurses - get to know their supervisors and check in with them. Families who are more involved get better results - as usual, being nice (don't assign blame, don't call them "sneaky") works better than being bitchy - but sometime bitchy gets results when nothing else will (last resort though).
-Find out who the Ombudsman is for that area, and see if they will take up your case regarding missing hearing aides.
-Go to the alz.org site for tips on how to cope, they are the experts, and there is a lot of support out there.
Best of luck, if you need to 'talk' e-mail me, my address is in my profile.
posted by dbmcd at 5:09 PM on September 28, 2005

You are my hero too. I spent a week with my father as he was failing neurologically, and it was very difficult for me at times.

Frequent orientation, and re-orientation, is important. It's important to remind her who you are, where she is, what year it is, who is and is not present, on a frequent basis. Orientation once a minute is not necessarily inappropriate, if she's not holding onto the information that long. If she is somewhere safe and comfortable, you can point this out to her frequently, too. Re-orienting is probably the most effective and useful technique to use in communicating with people with Alzheimer disease.

Ignoring or gently changing the subject when nonsense talk comes out is OK too. Sometimes people can say some nonsense but then become disturbed by what they said, either because it's frightening content or because they appreciate that on some level it's nonsense. You are well within your rights to take the helm of the conversation and steer it to a more coherent, happier place.

Finally, do not take anything she says or does personally. Seeing a loved one grapple with dementia is upsetting. Please remember at all times that your presence - just that - is a blessing and a great benefit to her. If she says things that disturb you, remember it is her illness talking, and just let it go.

I think you're very brave and are doing a wonderful thing. Please feel free to email me (address in my profile) if there are any other questions a neurologist could answer for you.
posted by ikkyu2 at 5:44 PM on September 28, 2005

also, give yourself some time to adjust - it's a huge change for you and you'll need to orient yourself before you can solve anything for her. best of luck.
posted by judith at 9:27 PM on September 28, 2005

Be patient, be calm. Easier said than done, I know, but it's the answer to a) and b).

All the best to you and your Grandmother.
posted by mtonks at 12:12 AM on September 29, 2005

Two of my grandparents (separate sides of the family) both suffered from senile dementia, and one from Alzheimers too.

The things we learnt from it:

* It can kill/wreck the carer. My uncle was his father's primary carer/family contact, even though my grandfather lived in sheltered accomocation. He had to deal with the paperwork, etc. My uncle died not long after my grandfather. In my grandmother's case, it really messed my aunt (who was her direct carer, in my grandmother's own home) up big-time and almost killed her too.. thankfully she's just about getting over it (my grandmother died earlier this year).

* You have to get the quality time ASAP. Eventually the afflicted reaches a point where nothing makes sense at all, their muscular functions have gone, their personality no longer exists.. at this point they're dead. It's therefore very important to get your quality time in before they hit this point, and that point approaches VERY rapidly. My grandmother could only barely recognize me and hobble around, and moved to this near vegetitive state within a few months.
posted by wackybrit at 1:29 AM on September 29, 2005

The above posters are right that small doses of medication can really, really ease their anxiety. Risperidone is the name of one that I know of - that's not medical advice, just a name to google and ask the doctors about (obviously). It is an antipsychotic medication, which seems weird for use in the elderly, but it really, really takes the edge off their paranoia (about the boys breaking in) that likely only increases as their illness progresses. It eases the anxiety/paranoia, which are two of the emotional aspects which are very taxing on the caregiver (you). So, don't be afraid to ask about these medications, armed with information. In our experience it is NOT offered right away, many docs don't know about this slightly off-label use, but the effects are well worth the effort if deemed safe/appropriate.

Listen to the above posters about getting help for you. You can help her more when you're rested, happy(ish), and exercised. You can't do everything, nor should you try. But you are already a hero for doing this. I've also decided that should either of my grandparents get to this stage, I'd take leave from grad school to care for them. It's more important in the long run.
posted by fionab at 9:03 PM on September 29, 2005

Just to add to above.

There are two issues as I see it.

Yourself.
Her.

Let's deal with yourself first.

Get good rest. Eat smart. Exercise. Give yourself a schedule. Make sure in your off time from spending time with her, you keep yourself sane. If you need an email of praise, drop me a line. I'll tell you how wonderful I think you are. Make sure you have scheduled calls home to the Mr. and if you can afford a pair of USB cams, better yet, if you have medium/high speed to make sure you 'visit with him daily', with a video chat.
Do you have a big hobby that you brought with you? Make some of your side time personally rewarding. Watch movies you love. Re-read a favorite book. You need your own stability

Depending on the dementia, there may or may not be local support groups. There are certainly online support groups. Also, talk to the hospital she's at. They know and may be able to be of help. Talk to them - the day nurse manager, the manager of the facility - these people will both know personal options for you.


For her
6 1/2 hours on day one? Slow down. You're a bit of a stranger to her. Try a couple of 1/2hr -1hr visits. Don't overwhelm yourself or her.
Speak to the physician who she's seen - are there alternatives to make her life easier? They may have seen her too fast/not re-evaluated fast enough.

My father has alzheimers and my earlier ask.me link might be helpful.

Often, the conversations are repetitive (often that I know what he's going to ask before he does...), often, unintentionally painful (I do not get along well with my mother's side of the family, and the questions about how some of these people..are painful.)

Doesn't matter. He's my dad. I know it has zero to do with me. Zero. I never forget it. Even as I get frustrated and know it will get worse. All I can say is that there are other wonderful people around. I know your family is there, a weekly visit by them (or 2x a week?) might not be bad either. Bring pictures, anything that she expresses intrest in (crosswords, games, cards)

Last thing. When your feeling weak or frustrated, know down to the bottom of your soul that you're making a difference. I know too many people who won't/can't/don't. Doesn't matter. Doesn't mean that they are bad people.

Just means that you're wonderful.

And again, you're my hero.
posted by filmgeek at 3:52 PM on October 1, 2005