Dealing with a grandparent with dementia - advice/support

In My Humble Opinion
1

I’m eager to hear from other Dopers who have dealt with an elderly family member with dementia. My 83-year old grandma was diagnosed last year with dementia, and from what I remember a pretty advanced level of it. Her car keys were taken from her then, too. We’ve had an older female family friend move in with her (she lives in a 3-bedroom house) as we didn’t feel comfortable with her living alone anymore, so far that’s worked out pretty well and she even seemed to improve a bit although every now and then she still asks why Sandy’s clothes are still in the bedroom. My dad has to remind her “because Sandy lives there!”.

So anyway, I hadn’t seen her in about a month and we had our whole family over for Thanksgiving - like 14 people. That little change in my grandma’s routine just sent her over the edge. The night before Thanksgiving she called my parents EIGHT times to ask who was picking her up, what was she bringing, whose house was she going, too, etc. EIGHT TIMES with the same questions in the course of 3 hours. The last 2 calls she was convinced we were all coming to her house but still asked who was picking her up. Then on Thanksgiving, Sandy told her it was time to go (she was driving her to my house) and my grandma had no idea what she was talking about - had no idea it was Thanksgiving, no idea she was supposed to be somewhere. Then the whole way over she kept telling Sandy not to take her to my house, to take her to her son’s house (my dad) because that’s where Thanksgiving is. She got to my house and just seemed amazed that we were all there, she kept saying, “this is all a surprise to me, I didn’t know we were doing this today” and despite the fact that I try to REALLY not get irritated or at least let it show I said “but Grandma it’s Thanksgiving” and she just said “I know happy thanksgiving”. Then all day she just kind of complained about everything, nothing was being served on time, the cookies were too hard, it was too cold in the house, every strange noise bothered her - which is NOT her personality at all. She was always the most tolerant, easy to please person I’ve ever known, just genuinely sweet and easygoing all her life. This “person” she’s become because of the dementia is heartbreaking and it’s crippling our family as none of us know how to deal with this or what to expect. Clearly a major holiday was so much for her to comprehend that she just couldn’t get a grasp on anything all day, and her memories were erased as fast as things happened. How can we pull together to help each other face her changing personality and needs, while addressing her issues with suddenly becoming more compative and stubborn, and occasionally saying inappropriate or mean-spirited things which I understand happens in people with dementia as they lose the ability to censor themselves. We are also concerned about Christmas - it’s generally a source of chaos for us as we have a 3-year old who’s all about running around, opening presents, singing songs, plus all the gift opening for the whole family, dinner, etc. we really feel is too much for her but don’t want to exclude her at all. Help… we just feel really lost and sad.

2

My grandmother and my mother-in-law have Alzheimers.

Just remember, it is not them - it’s the madness of their condition making them like that. (In the case of my MiL, it’s enhancing an already unpleasant character, but that’s a different story.)

I spotted my grandmother’s condition about ten years ago, and had a terrible job convincing my great aunt (her sister) that all the bitchy ways in which my grandmother had upset her were just symptoms. The best advice I can give is: ignore the nastiness, and agree with the nice things.

She was actually diagnosed five years later, and deteriorated rapidly. She is now a shell of her former self, forming half sentences, living in a specialist home.

Each person’s case is different, but generally routine is good; change of routine disturbs them. Even though their short-term memory ends up shot, they do retain a certain general environmental awareness.

Every affected family has a different way of coping, and some may find that my family’s way has been very pragmatic, even seemingly heartless: wanting granny around for Christmas would be for our happiness, not for hers. She would not appreciate it; not know where she was, why she was there, or who we were; worst of all, the change would upset her. So we’ll leave her in the home, and visit her there. Even visiting her is entirely for our peace of mind - she does not understand our visits.

Another example of our apparent heartlessness: my grandfather, her husband, died about six months ago, but we haven’t told my grandmother. Why not? Because for the 30 seconds or so she comprehended the news, she would be terribly distressed, and after that she would forget, and have to be told again, and again, and get distressed each time.

I hate not to offer more positive advice, but there’s nothing positive to say about the condition. There are drugs that retard the condition somewhat, but it’s rather inevitable. It sounds like your grandmother still lives on her own? This will soon become unwise. As her condition deteriorates, give her the care she requires to keep her, if not happy, at least not distressed or in harm.

I’m very sorry for your troubles.

3

Your grandmother sounds like she’s either very close to needing professional care, or she needs it now. Please don’t allow your family to be in denial regarding how much care she needs, and expect the caregiver to handle her care around the clock. That’s far too much work and pressure for one person. People with advanced dementia need 24-hour care in a secured building. She may eventually need a great deal of physical care like diapering and such- does the family friend have training in this kind of care? It may be time to start looking into care facilities and if she’s ready for one.

4

I’m very sorry to hear about your grandmother, Winnie. I can definitely sympathize, as my brother and I are having to deal with my mother’s dementia right now. In fact, I just spent the better part of an hour reading through some of the (heartbreaking) threads with “dementia” in the title here at the Dope.

The personality changes you describe are, for the family members, probably the most horrible part of the deal. My mother has become deceptive, nasty, and incredibly paranoid, while still oblivious to the nature of her condition.

I wish I had better advice or support to offer, but I don’t have a whole lot of experience dealing with it (just the last 6 months since my father died). However, if I could offer one piece of advice, make damn sure all the legal angles are neatly tied up ahead of time. My brother and I are having an incredibly difficult time taking care of things because she doesn’t trust us (because of the paranoia), and we don’t have the legal authority (yet) to step in and take care of her affairs.

Good luck to you. I’ll be back frequently to check this thread.

5

My sympathies for everyone dealing with a loved one with dementia or Alzheimer or any disease that affects people that way.

My grandmother had Alzheimer and for the last few years of her life she was alone in the nursing home without visitors or anything. It was horrible that no one could visit, but visits traumatized her for days. She would simply scream and scream and scream. The last time my father visited her, he came out of the home and sat in the car and cried. Devastating.

I think it’s really important to remember that as these diseases progress, the person isn’t going to enjoy things the way we think they “should.” It isn’t cruel to leave someone out if leaving them out means they aren’t upset or stressed.

Such cruel, horrible diseases. Best wishes.

6

Winnie, I am a nurse, I work with dementia patients. I also have a grandmother with it, plus numerous other relatives.
Best advice I can give is keep it short and sweet. Have her over for a small part of the festivities, just the dinner, or just presents opening in the morning for Christmas. Make it a structured event, give everyone a timetable so everyone repeats (ad nauseum) the same information. Give her a copy. IE we’ll be picking you up at 430 going to Winnie’s house, for turkey dinner at 5, then we will watch the carollers on tv, and you will go home at 7. Or whatever works for you.
Repetition helps. Lists help. Keeping things low key is good too,
If you have any questions you can email me, its in my profile…

good luck

jf

7

I wish you both well & will share the one bit of advice I, as a non-proffessional, can offer. Listen, listen, listen. Correct when you can, hold her hand and love her when you can’t. Do your best not to show any anger/agitation in front of her (you can beat the hell out of a speed-bag and curse out Og for being unfair after she leaves).

I lost my Mom to the symptoms you described above. Alzheimers/Dementia/decreased brain size due to emphezema. At the end, a massive stroke didn’t kill her because her living brain matter had shrunk so small that the stroke couldn’t build up enough pressure to kill her. Love her while you have her; make sure she knows how much you care. Once she’s gone, that door closes permanently.

8

It’s hard. My grandmother was officially diagnosed with dementia this year, although we had known for a while before that there was something up.

Just like yours, my grandmother asks the same questions over and over again. After being gone for a year, I went out to dinner with my grandma. I had been told that her memory was getting worse, but I wasn’t there to see just to what degree. In less than an hour, she commented about the air conditioner, almost the same comment word-for-word, no less than seven times. Each time was a little more heartbreaking than the last, to me.

One time her medications were messing her up. They put her in the hospital temporarily until they could sort things out. Having her tell me that she wasn’t lonely because all the little people visited her all the time scared the living hell out of me. Luckily the hallucinations went away after they altered her medication, but it was eye-opening nonetheless.

It is hard, to see someone degenerate into a shell of their former self. My grandma has been going through this process for about 9 years or so, beginning when a leg amputation (resulting from a bad quadruple bypass) took her mobility and independence. Left to the mercy of the kindness of her children (which is far from enough) she became housebound. My mom and aunts didn’t make her follow the exercise or diet regimen so she never regained her mobility. My mom was an idiot and as misery loves company, convinced my grandma to take up smoking again. A prisoner of her own home with only the rare outings, she just watched television and didn’t do much to stimulate her brain, which I’m sure didn’t help against the dementia.

It’s hard. For me, every time seeing hurts. It makes me feel like a horrible grandchild for not visiting her enough, for not helping her enough, for not caring for her as much as I wanted to. Maybe I got scared and sad and distanced myself from her after I left for college. I guess I don’t know how to deal with the dementia, neither. All I know is that each time she asks the same question to me, I feel sad. I try my best to answer each question, no matter how many times it’s repeated, patiently. I think I owe her that at the least.

If there’s any advice I could offer another person going through the same thing I am right now, it would be to just be patient. Remember that it’s not their fault; it’s the sickness. Remember all of the good times and how the person was before the sickness.

9

My only advice to you, is to love her, and treat her with respect. Do all you can do for her, and make sure she’s safe and comfortable at all times. There’s not much more you can do.
I know it’s difficult to deal with, but it can be dealt with.
You’ll be glad you did.

I’m the caregiver for my 91 year old grandmother.
She’s been diagnosed with dementia for over a year, now.

My husband and I had several rooms built on to her home, and my husband, myself and our daughter moved in, so I could care for her 24/7/365.

My mom couldn’t do it, because of her health problems, which have made her very, very bitter and mean. She wouldn’t do it anyway, because of her own bitterness.

My sister couldn’t do it, as she’s one of those types who believes that ‘God will heal! No doctors/medicine needed!’ type folks. So, it was out of the question to even bother with her.

So, it’s just myself and my daughter, as my husband is an OTR truck driver, so he’s gone for 2 weeks at a time, and he doesn’t have to see it/deal with it every day, like we do.
He does deal with it very well when he’s at home, though.
He’s got the patience of a saint, I swear he does!
I just wish that even a little, teensy-tiny portion of his patience would rub off on me!

It’s not easy, but I am committed to taking care of her, until her dying day.
I used to be a nursing assistant, many, many years ago, and I’ve done it all. So, there won’t be any ‘surprises’ for me regarding her care.

She’s very confused most of the time, and she’s not able to think of our names most days.
She can’t keep track of what day of the week it is, she’s almost not able to write her own name anymore, and she doesn’t take direction well, because she is having such a difficult time understanding what is being said to her.

I have had POA and Medical POA for her, for over a year, and just two weeks ago, signed a DNR order for her, at her doctor appointment.
Her doctor brought it up…I wasn’t the one that instigated it.
But, I recall my grandpa had a DNR order, so I went ahead and signed the paperwork for it, after producing all of my POA paperwork for the doctor’s office to copy, and attach to my grandmother’s DNR orders.
I realized that it would be better for her to just pass, if she had a serious medical issue, rather than to be brought back, and live out the rest of her life not knowing anyone, or being aware of what was going on around her.

As it stands now, she’s in rather good health for someone her age, so I don’t see the DNR coming into use anytime soon!

10

Just like nonacetone, I have POA of my 91 year-old Grandmother with Alzheimer’s. She started showing symptoms about nine or ten years ago, and she has been in assisted living and then a skilled nursing facility since 2004 (I think- the years blur together).

When she was first moved out of her house, she was quite angry and agitated (because she wasn’t being treated). Very combative. She’s steadily gone downhill and now thinks that the nursing home is a motel, a hospital, her house, etc, depending on the day. Other days, she’s quite lucid and knows who I am and how we’re connected. While she’s confused 99% of the time, she has not so many days where she’s really agitated. Those are the days when she wheels herself into other residents’ rooms and demands that they get out of her house. Or she she’s panicked because she doesn’t have money for the bus home. There are many other “glitches” but I don’t want to list them all.

But I will say this: Even before she fell & broke her hip (while having a hallucination), there was NO WAY I could have let her move in with me. I have the room, yes. But I lack the patience and know-how to take care of her properly. The nurses and aides at the nursing home are trained to do everything from showering and diapering her to recognizing that she may have a UTI because she’s acting more agitated and confused. They also have all the equipment Grandma needs, and access to a doctor 24/7. They keep track of everything; her meds, a percentage of what she eats at every meal, her weight, how many times a week she poops and so on. And ultimately, those men and women helping Grandma go home after 8 hours. They don’t have to deal with it all day and night.

Winnie, I know exactly how you feel regarding the change in personality. It’s true- she’s been replaced by someone else. Yes, it’s annoying… or disconcerting to have to repeat your sentences eleventy different ways in a half-hour. It’s distressing to see her distressed, knowing you can’t do a damned thing about it. It sucks. I agree with jjimm and everyone else who’s mention routine and structure. Grandma gets overwhelmed by any deviance in routine. And for the holidays, it’s best to have small groups of four or less visit on her turf at any given time. She could have many different visits in one day; an hour after we’ve left, she’s forgotten that we were there. We also limit our time spent with her- no more than an hour. After that she gets tired of talking. It just takes too much energy.

So- if I were to dispense any advice (take it or leave it), I would say just think of her as a new Grandmother. The old one is gone, but the one remaining still needs love. Try to be patient, but if you’re wearing thin, shorten your visits (I’ve had to leave after 10 minutes a couple times). If yours is anything like my Grandma, don’t correct her all the time-- it’s just gonna piss her off. When she’s talking weird, just nod your head and smile. Go with the flow. Life is more pleasant for everyone that way.

nonacetone- I applaud you for taking care of your Grandmother. Lord knows I couldn’t do it even if I had training.

11

Kitchen Wench, thank you. It’s really difficult sometimes. If my daughter wasn’t here, I’m not so sure I could do it! She helps me out, and listens to me when I become unglued.
I’m also taking care of my mom, who has health issues, such as cleaning her house, taking her to Dr. appointments, taking her to the store, etc.

Today is mom’s birthday, and she’s 69 years old. I’m starting to see signs of dementia in her now, too. I have for about the past 6 months, or so.
It’s not just me seeing it, either. Others are seeing it, too. Friends AND family.
I cannot take care of both of them, at the same time.
I have no idea what will happen when it gets to that point.

12

Second this, as well as calls to get her some in-house care. Experimenting with different meds may help, but the ones that don’t work… won’t. Quite spectacularly. And it isn’t pretty. Find the best nurse you can, though she’ll likely be expensive.

A relative of mine who had dementia almost drove me to murder at one point. But for some reason (okay, probably meds), though she spent much of her life sour and depressed, she spent her last years affectionate and kind and the maybe the happiest I’d ever seen her, even as her physical health failed. Truly bittersweet.

13

{{{{{Winnie}}}}}

My grandmother had Alzheimer’s before she died. It is heartbreaking to have to deal with.

I’ll second this. I would also recommend leaving the 3-year-old out of the part of Christmas for your grandmother- neither she nor the 3-year-old is likely to get much out of being around each other. The running around and singing and all is going to stress her, and being made to sit still and be quiet for her is not going to make the kid happy. Have someone babysit the 3-year-old somewhere other than where the activity involving your grandmother is going on. Maybe bring the kid in to see her for a few minutes, but not for her whole visit.

Do the parts that involve the chaos and kids running around earlier or later, when she’s not there. Maybe just open the presents from her or Sandy with her around, and do the rest of them some other time.

14

A lot of excellent advice in this thread.

To reiterate: structure; diminish the chaos (don’t have the little tyke in her presence too long, as this may agitate her further); don’t take things personally.

Just keep telling yourself that it’s the illness speaking, because that’s exactly what it is. She can’t help herself.

Do not argue with Grandma. Just agree. Let her have her delusions; you can’t talk her out of them with logic. Logic no longer applies.

Get used to repeating yourself. Be aware that whatever you say will most likely be forgotten within a few minutes, as will things you say to her.

My dad died of physical complications of ALZ (and anaphylaxis) last year. We were worn out from looking after him at home, and private nurses are expensive. The situation resolved itself because he was having so many medical problems. Medicare and his Blue Cross PPO picked up the costs for hospital stays, and Medicare was set to pay for at least the first 100 days in the nursing home. (It starts over again if the patient is out for hospitalization for three nights and then goes back to the home.) He wasn’t there that long, though.

I learned to keep my visits short because the longer I stayed, the more agitated he got.

Anyway…please do print out the thread and take the advice posted.
I feel for you, I really do.

15

By the way - I have already mourned my grandmother. That person left several years ago. My grandfather already had, too, when he passed away. He still visited her every day (30 miles each way, aged 93, driving at 20 miles per hour, pissing off everyone else on the road) until a week before he died, bless him, but I suspect it was just for the want of something to do.

When she dies, I will be happy for her.

Visiting the home she is in for the first time was like stepping into a Bruegel painting. Dozens of ranting, distressed people, sitting or wandering around in confused dementia, dribbling, soiling themselves, screaming at each other or their invisible demons. It’s horrifying, and the nurses who work there have my undying admiration.

Ironically, because she’s now under 24-hour care from medically trained staff, she will live for years and years more, rather than pass peacefully like my grandfather did. It makes me even more strongly in favour of euthanasia. If I ever get in that state, I want someone to pop me off and spare me the suffering.

16

Winnie,

Another nurse chiming in. A lot of good thoughts and advice so far. Your Grandma’s thoughts are not really her own anymore, they belong to the illness. I know it’s hard to watch and it will get harder still, but do the best you can to take care of you. Only then are you able to help your Grandma.

She may very well be able to stay home for a while,it’s all very individual. I work in Long Term Home Care. Each state is different and offers different coverage but find out what VA has in terms of home care. You may be able to have a home health aide come in for a few days / hours each week to give Sandy a break. One thing is certain, your Grandma shouldn’t ever be left alone and a lot of safety measures need to be put in place besides taking the car keys.

Things like removing stove knobs, placing sharp knives out of reach, getting home equipment (commode for bedside). There are all kinds of things to help someone stay home and be safe and comfortable. Talk to the rest of the family and see if you all want to try and have her stay home as long as possible. I’ve had a couple of Alzheimer’s patients spend their last few years at home. It takes a strong, available family unit and it can be done.

If you guys decide you want to go the route of a nursing home, do plenty of research first. Get recommendations and make surprise visits.

Good luck and hang in there. I know this can be heartbreaking, my heart aches for you and I don’t even know you. I hate this disease that robs us of so much.

17

I’m sorry you have to go through this Winnie. I’m just starting down this road myself.

My 71yr old father was diagnosed with Alzheimer’s, the day before Thanksgiving. Or rather, the doctor ran out of tests for other things, and Alzheimer’s is what is left. It’s still early. Dad lose of short term memory just seems to be starting.

Any advice for how to set things up in their home, so that Dad will be most comfortable/able to function for the longest time? My SO and I are in the process of moving, and we have decided to look into a duplex or a house with an in-law suite, so that my parents can be close, not have to take care of a house, but not be in our living space.

What can be done to maximize quality of life and independence in the early stages?

18

I’m so sorry to hear from everyone who is dealing with this–as mentioned, you are forced to start mourning someone whose body is still alive. In some ways my three grandparents who died suddenly were lucky.

19

This is what I was coming here to say too. You have to allow yourself to feel the loss now because the grandmother that you knew is gone. That’s the hardest part. We have culturally acceptable ways to mourn someone who physically dies. But when someone’s body is still living, breathing, and moving around but whose mind has changed so drastically that they are no longer the same person, we don’t have any formal way to acknowledge that or to deal with it. My advice is either alone or with your family, take the time to remember who she was, to reminisce about all the good times and to accept the sadness that that person is gone.

20

You’ll feel like you’re excluding her. But, unfortunately, your Christmas traditions are just not something that someone with dementia can be expected to deal with. If you try to include her and do all the stuff you traditionally do, you’re going to end up stressing her. She won’t enjoy that, and I suspect the rest of you won’t enjoy being around her in that state, either.

You face one of many hard choices that you will face in this situation- the best thing for her in this situation isn’t going to be what you’d like. You can try to do all the stuff you traditionally do with her there, which is not going to be very pleasant for her, but will allow you to pretend (at least to some degree) that nothing has changed. You can include her in all of it but drastically cut back on your family’s Christmas celebration. That would be less stressful for her, but other members of the family might not like it. Or you can continue to have a larger Christmas celebration, but only include her in part of it. That will allow you to do all the stuff you associate with Christmas and won’t stress her out, but it will make you feel bad for excluding her.

This is one of the terrible, heartbreaking things about dementia or Alzheimer’s- the thing that feels best to you might not be the thing that is best for her.