counsel wanted on dealing with a loved one's dementia...

thunderbyrd · Jul 20, 2013

hi, fellow fifty-ers. i've got a problem coming on with my mom. she is 73 and she is developing alzheimer's or dementia and doesn't believe it. the reason i'm putting this post up is that i'm real sure others here, in our age bracket, have had to deal with this and any wisdom is very welcome.

some days she is lucid and very much her normal self. some days she will ask me the same question over and over. she frequently burns food, her driving has become very poor. my father told me that a couple of years ago, she caught the kitchen on fire and did several thousand $ worth of damage. - my father had kept that quiet. -

my sister, who spends more time with our parents than i do, told me that mom's deteoration became noticably worse when she had some kind of treatment for her thyroid about 3 yrs ago. my sister also suspects that our mom might have had a stroke awhile back and that dad kept it quiet.

the reason my dad keeps quiet about alot of this has to do with my mother's anger issues. she has always had a bad bad temper and she tends to be vindictive. now, if anyone trys to talk to her about her forgetfullness, she "goes off" on dad the minute they are alone. it is at the point where dad is exhausted and absolutely needs help.

my sister are planning to sit down with mom sometime in the next 2 weeks and try to help her confront this, an "intervention". is this a good idea or a bad idea? we really need her to get into some kind of treatment or therapy but in order to do that she's got to accept that something is wrong.

any advice is welcome, God bless you.

ValleyGal · Jul 20, 2013

Oh dear! Intervention for someone with dementia is not a good idea. There are several reasons for this. Not only will it cause defensiveness (due to their denial), in a few days she won't even remember having had the intervention.

In the early stages, people with this diagnosis do not want to admit they have a problem. It's hard for them to accept, and soon enough they forget they even have it. It does nothing but cause irritation and agitation if they are constantly reminded of things - especially something as devastating as a diagnosis like that.

The best thing you can do is educate yourselves on the progression of dementia, and how to prevent behavioural issues that go along with it, like aggression. If your mom has always had a temper, it might actually be uninhibited now because of the dementia. Things could get a lot worse. Learn as much as you can about the "gentle care approach" - it's a model for care that nurses and aides use that allows for as much independence as possible, and is gentle enough to avoid promoting aggression.

There is a book called "Preventing Alzheimer's Aggression" by Len Fabiano. It is good at helping understand tips and tricks to help keep mom calm. Learn what your mom's triggers are, and avoid them. When she asks the same questions over and over, it's because she forgot that she asked it already. Simply have patience (easier said than done!) and repeat your answers. Eventually she will stop asking.

Make her home safe. She will likely develop "tunnel vision" - she won't look up or down. So if you need to lock the door so that she won't go wandering and get lost, install a lock at the top of the door where she won't bother to look. Remove area rugs because she won't see them and may start tripping. Eventually, it will become hard for her to see the toilet - it might become necessary to find a black or wooden seat so she is able to see it. Muted pale green is a calming colour that helps prevent aggression, so painting might be an option for their home. Also, remove things that are too stimulating. If there is a lot of clutter or noise, it will exacerbate aggression.

You may notice aggression happens easier and more frequently at a specific time of day - normally around the supper hour or early evening. This is called sundowning, and might be a good time to just sit quietly with her and stroke her arm with your thumb.

Never approach her from behind - always approach her from an angle so she can see where the voice is coming from. If she is sitting and you are standing, always squat down and talk with her at eye-level - but make sure you are positioned so if she strikes, you are ready to defend (you can put your hand lightly on a knee so you are ready to hold her hand if she moves to strike. Always maintain a soft and calm voice. If you are in a hurry or impatient, she will pick up on it and her agitation will increase.

Remember most dementias are progressive, so some of these tricks might not be significant now, but could come in handy later. She will start forgetting the most recent and work back. In time, she will be reliving times past - if she worked outside the home all her life, she may forget she is retired, and try to "get to work". All you have to do is tell her "today is Saturday so there is no work today." Or tell her she is on a vacation day. Go along with whatever she says because in her mind, today is not today. For her, today could be 20 years ago.

To help with not burning the kitchen down again, do you have an extra piece of kitchen countertop, or could you get one that is identical to the one she has? Have a piece cut the size of the stove, and when the stove is not in use, place the slab over it. She will not see the burners and forget to cook. Then when it is time to cook, maybe your dad will need to supervise - visit with her in the kitchen and watch to make sure it's safe. Then when the burners are cool again, he will need to place the slab of countertop back on the stove.

If driving is dangerous, this might need to be managed as well. All the car keys might need to be hidden - not in drawers in case she starts rummaging. One alternative is to install a hook high up and hang the keys out of where she would look.

Hopefully while she is still mentally "capacity" you will be able to make sure her will is up to date and find out her wishes for her end of life. Maybe this can be done at a family lunch or picnic so everyone is on the same page - but don't talk about it as though it is impending. Bring it up as though you are thinking about doing your own, and ask what her thoughts are on hers, so as not to provoke agitation.

Please, though, whatever you do, don't try to make her accept the diagnosis. Don't do an intervention. Therapy won't help unless it is a whole holistic form of therapy that includes dementia-specific treatment. There are some meds that are helpful in some types of dementia that slow it down, but if this is not alcohol-induced dementia, it will be progressive no matter what therapy or treatment will be provided.

My heart goes out to you and your family. This is a very stressful time you will all be facing. Be available to each other, be supportive, and help your dad in practical ways when you can. Give him a break sometimes, and be gentle with each other and yourself.

RDKirk · Jul 20, 2013

I've had a couple of aunts who suffered from it, and my father in law as well.

I agree with the previous poster that intervention is not likely to work. If she is lucid at the time, she's likely to deny a problem. Whether she denies it or not--she won't remember it later.

At some point soon, you're going to have to take her car keys and limit her movement...don't expect her to rationally understand why you're doing it. At the time we took my father-in-law's keys (he had been a bus driver for years after an Army career) this was the last straw:

We got a cell phone call from her father at midnight He had decided to drive to a nearby town, but had gotten disoriented lost--like many with dementia, his rationality "sunsets"--goes down-- in the early evening. I got on the phone with him and tried to keep him calm while also trying to get him to read some nearby road sign that would tell me where he was.

He told us where he had been heading, but couldn't see any signs nearby and wouldn't get back into his car to drive far enough to see a sign. It was all I could do to keep him calm and non-belligerent.

In the meantime, my wife was calling the state police to start a search for him.

We got in the car and headed out to follow his path. On the way, we got a call from the state police--they had found him....nearly at the state border far beyond the town he had been headed for. That had been an enormous blessing. As one state patrolman was leaving the station to search for him, my father-in-law was actually sitting at the very interchange the patrolman had to take to get on the Interstate.

So the patrolman took him to the station (gingerly, because police officers tend to make him belligerent) and we picked him up there. On the way home with him early the next morning, we decided to stop at a Cracker Barrel with him for breakfast.

He had regained some rationality at that point...and had utterly forgotten all the events of the previous night.

You mentioned that she seems to have gotten worse after a thyroid treatment. The same thing happened with my father-in-law, who had to undergo knee surgery. Going through anesthesia seems to have caused his dementia to take an instant huge leap worse.

It seems that a person's true nature--whether good or bad--comes to the front. Both of my aunts had several sons. Both of them were unable to recognize their own sons from anyone else.

But one aunt presumed all male strangers must be her sons, and mothered any man who entered the room. The other aunt presumed all male strangers were dangerous and met all with fear and viciousness--including her sons. Both of these reactions, when we think back on it, are windows to what we've always known about their real natures.

My father-in-law had a rough, violent childhood and fought in both the Korean and Vietnam war. He's now advanced in dementia to the point that he recognizes nobody and can't carry a coherent conversation. But he's 230 pounds, six feet four inches tall, has no chronic illnesses, strong as an ox...and is convinced he must escape confinement at all costs.

We've gone through all kinds of sedative cocktails. Nothing seems to work for more than a few weeks before he gains a tolerance. We've had to move him out of one nursing home after another when he has gotten violent and actually hurt another patient or a nurse. At this point he's in literally the last nursing home in the state that would accept him.

Your mother will probably never accept the prospect of a nursing home. She may never accept the need when she's rational.

rebornfree · Jul 20, 2013

I feel for those of you with loved ones suffering in this way. :hug:

I only know of my uncle who had it. He could remember his school days (70 years earlier) but not the recent past. He had mood changes and became abstracted at times. It was difficult for my aunt but she realised it was the illness and tried to keep everything calm.

I really cannot add to the advice below, but something which happened to me, may be a bit of help. I had a breakdown a few years ago and my mind refused to tell me things. For example I couldn't remember how to fill up the car, to get to places where I had previously known the route well, and how close friends I'd known for years were related to each other. Now this wasn't dementia, and I've got better, but my point is that I simply could not do these things. I wasn't being difficult or lazy. My mind wasn't providing the information I needed.

I mention this because I wonder if it is a little like dementia feels to the sufferer, in that they are not deliberately being difficult. They can only do what their mind tells them. Expecting them to behave normally will probably make the situation worse because their brain is no longer equipping them to do so. I guess that keeping calm, continue loving and putting the excellent practical advice given below is the best way to help your Mom, and above all, of course, prayer.

I hope you, your father and sister can really support each other in this, but be careful your mother doesn't feel like a "case". Is there outside support for carers? You each may need someone you can trust to talk to about the difficulties of the illness, and also your own sorrow in losing your mother as she was. Also don't be afraid to ask for prayer, either in your church, on here or on the mental health forum. Praying for you. :groupray:

God bless. :hug:

kaykay9.0 · Jul 21, 2013

My mother in law battled vascular dementia for several years till her death about 2 years ago. It seemed that sometimes she would accept what her doctor said more than the family. As I recall, I think it was her dr who insisted she quit driving and she accepted that. My sister in law was taking her to a dr who specialized in geriatric care-so that was a help as well. Blessings-it is a tough road for sure...

thunderbyrd · May 29, 2014

ValleyGal said:
Oh dear! Intervention for someone with dementia is not a good idea. There are several reasons for this. Not only will it cause defensiveness (due to their denial), in a few days she won't even remember having had the intervention.

In the early stages, people with this diagnosis do not want to admit they have a problem. It's hard for them to accept, and soon enough they forget they even have it. It does nothing but cause irritation and agitation if they are constantly reminded of things - especially something as devastating as a diagnosis like that.

The best thing you can do is educate yourselves on the progression of dementia, and how to prevent behavioural issues that go along with it, like aggression. If your mom has always had a temper, it might actually be uninhibited now because of the dementia. Things could get a lot worse. Learn as much as you can about the "gentle care approach" - it's a model for care that nurses and aides use that allows for as much independence as possible, and is gentle enough to avoid promoting aggression.

There is a book called "Preventing Alzheimer's Aggression" by Len Fabiano. It is good at helping understand tips and tricks to help keep mom calm. Learn what your mom's triggers are, and avoid them. When she asks the same questions over and over, it's because she forgot that she asked it already. Simply have patience (easier said than done!) and repeat your answers. Eventually she will stop asking.

Make her home safe. She will likely develop "tunnel vision" - she won't look up or down. So if you need to lock the door so that she won't go wandering and get lost, install a lock at the top of the door where she won't bother to look. Remove area rugs because she won't see them and may start tripping. Eventually, it will become hard for her to see the toilet - it might become necessary to find a black or wooden seat so she is able to see it. Muted pale green is a calming colour that helps prevent aggression, so painting might be an option for their home. Also, remove things that are too stimulating. If there is a lot of clutter or noise, it will exacerbate aggression.

You may notice aggression happens easier and more frequently at a specific time of day - normally around the supper hour or early evening. This is called sundowning, and might be a good time to just sit quietly with her and stroke her arm with your thumb.

Never approach her from behind - always approach her from an angle so she can see where the voice is coming from. If she is sitting and you are standing, always squat down and talk with her at eye-level - but make sure you are positioned so if she strikes, you are ready to defend (you can put your hand lightly on a knee so you are ready to hold her hand if she moves to strike. Always maintain a soft and calm voice. If you are in a hurry or impatient, she will pick up on it and her agitation will increase.

Remember most dementias are progressive, so some of these tricks might not be significant now, but could come in handy later. She will start forgetting the most recent and work back. In time, she will be reliving times past - if she worked outside the home all her life, she may forget she is retired, and try to "get to work". All you have to do is tell her "today is Saturday so there is no work today." Or tell her she is on a vacation day. Go along with whatever she says because in her mind, today is not today. For her, today could be 20 years ago.

To help with not burning the kitchen down again, do you have an extra piece of kitchen countertop, or could you get one that is identical to the one she has? Have a piece cut the size of the stove, and when the stove is not in use, place the slab over it. She will not see the burners and forget to cook. Then when it is time to cook, maybe your dad will need to supervise - visit with her in the kitchen and watch to make sure it's safe. Then when the burners are cool again, he will need to place the slab of countertop back on the stove.

If driving is dangerous, this might need to be managed as well. All the car keys might need to be hidden - not in drawers in case she starts rummaging. One alternative is to install a hook high up and hang the keys out of where she would look.

Hopefully while she is still mentally "capacity" you will be able to make sure her will is up to date and find out her wishes for her end of life. Maybe this can be done at a family lunch or picnic so everyone is on the same page - but don't talk about it as though it is impending. Bring it up as though you are thinking about doing your own, and ask what her thoughts are on hers, so as not to provoke agitation.

Please, though, whatever you do, don't try to make her accept the diagnosis. Don't do an intervention. Therapy won't help unless it is a whole holistic form of therapy that includes dementia-specific treatment. There are some meds that are helpful in some types of dementia that slow it down, but if this is not alcohol-induced dementia, it will be progressive no matter what therapy or treatment will be provided.

My heart goes out to you and your family. This is a very stressful time you will all be facing. Be available to each other, be supportive, and help your dad in practical ways when you can. Give him a break sometimes, and be gentle with each other and yourself.

wow, it's been almost a year since i posted this! seems like only a couple months. i'm sorry i didn't come back sooner - God Bless each one of you for your posts. i appreciate so very much the kind-heartedness in each of your answers.

Valleygal, when i read your post back when you posted it, i didn't want to believe what you were saying -intervention bad idea- but time and experience have proved you right. one day, it's possible to get her to believe there's something wrong, but by the next day it's all gone, like the conversation never took place. (i'll make a new post, this is unwieldy)

thunderbyrd · May 29, 2014

my mother grew up in a large family, she was the 2d oldest of 12 kids. they were very poor, and frankly, their father was not a good man. (no more detail is needed) their mother worked and worked to both provide and raise the children. i believe my mom and her older sister did a lot of the "raising". therefore, my mom has always been both very close to and very protective of her family.

since i 1st posted about this problem, one of my mother's brothers was killed in a terrible car wreck. this would have affected my mother very badly if it had been any of her siblings, but to make it even worse, this brother was the one who was always "the pet" of the family. and my mom has gone down some from that.

the strain on my father is immense. my sister and i do what we can, but we live 25 miles away and can't be there as much as we'd like due to work. so if you can remember to pray anytime for my father, please do and thank you so much.

ValleyGal · May 29, 2014

TB, I'm so sorry your family is going through this - not just the dementia, but losing your uncle, too.

As much as I do not like to be "right" in situations like this, I was a nurse on a special care (dementia) unit for a few years. I was the only nurse there who had been trained in preventing Alzheimer's aggression and I was one of the very few who had never been hurt on the job as a result of aggression. So I have a little experience. Imo, it is one of the hardest illnesses families have to deal with (another is ALS) because their loved one is "gone" but isn't really gone yet. And I'm sure it's very taxing for your dad.

There's a new sort of "profession" emerging that's sort of like a surrogate sibling kind of profession. If adult children live far away and can't be there for their ageing parent or loved one, they will hire a surrogate sibling type of person to check in on their parent once or twice a week, and report back to the adult children. They are very helpful when it comes to finding resources in the community, arranging nursing care or meals on wheels, or even figuring out when and where to move if nursing care requires a move to a facility. You and your siblings might benefit from this type of service, and it might give your dad a little piece of mind. They might even be able to find him some respite care once a month or a day-program for people with dementia.

But for you and your family, make sure you have access to whatever caregiver support you can find.

My heart goes out to you and your family. I think your situation will become much more common as people our age have ageing parents who require our attention. Will be praying for your family.

thunderbyrd · May 30, 2014

VG, thanks much for your wise words. we will, at some point, need the kind of caregiver you've described here.

you know, something i've wondered about (and this has nothing to do with Mom): how much do you reckon marijuana use will contribute to dementia? i think about how many in our age group indulged in it in their younger days (and some never stopped). i think about millions of people, lost in a fog.

ValleyGal · May 30, 2014

I agree that those who use mj may very well be lost in a fog, but there is currently no known association between dementia and mj. There are different kinds of dementia, one of which is caused by lack of Thamine (vitamin B1), often brought on my alcoholism. Iirc, it progresses as long as the person continues to have the deficiency, but stops (and maybe even reverses) with increased B1. This is called Wernicke-Korsakoff's Syndrome.

There are other types of dementia such as Pick's, Parkinson's, Vascular, etc. Iirc, Alzheimer's is just the most common. My grandfather passed at the age of 54 from early onset Alzheimer's back in the 70's. But none of them have been correlated to drug use, that I know of.

rebornfree · Jun 3, 2014

I'm sorry to hear about your uncle thunderbyrd and am praying for your family :prayer:

.

thunderbyrd · Jun 4, 2014

rebornfree said:
I'm sorry to hear about your uncle thunderbyrd and am praying for your family .

thank you so very much.

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counsel wanted on dealing with a loved one's dementia...

thunderbyrd

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