Medical Forum / Diseases and Disorders / Alzheimer's / July 2007
First post, lots of questions, only a few for now
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Gwenhyffar Milgi - 25 Jul 2007 21:57 GMT Hi guys,
I've been reading the newsgroup for a few months now. Lots of good advice and I've been taking notes.
My dad has Alzheimers _and_ vascular dementia. My mother (61) is his sole caretaker, although she is arranging for him to go into day therapy for one day a week in the near future.
Unfortunately, he is only 65 years old. We had known for a while that things weren't quite right, but it still came as a shock when the final diagnosis came.
The one thing that seems to be getting worse fast is his sleeping. He spends a lot of time asleep and he is going to bed earlier and earlier.
The other thing is that he has terrible headache "pangs". Short bouts of headaches, interspersed with longer headaches.
Does anyone have any experience with the sleeping and the headaches? My mum is a bit lost in the medical world at the moment and still finding her own bearings in this new world she has entered.
He is on Exelon, and he is also on medication for his heart, as he had 3 heart attacks 8 years ago (which we feel is what triggered at least his vascular dementia).
Thanks in advance for any thoughts.
Gwen
Tumbleweed - 25 Jul 2007 22:38 GMT > Hi guys, > [quoted text clipped - 26 lines] > > Gwen Welcome to the club no one wants to join :-)
It could be worse, he could be having delusions, wandering, being disruptive. I certainly wouldnt be trying anything to change his sleeping.
Your mother should be looking into long term care now, you might not need it for some time, but I beliee that **in general** the earlier you get Az the faster it seems to progress,and better to have something lined up earlier than be forced into picking the first available home..I'm sure you will have realised from reading here, no single person can look after an Az patient 24x7 on their own, without eventually becoming stressed out and ill themselves.
re the headaches, I think that is an issue for his doctor, dont recall seeing it mentioned here before
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Gwenhyffar Milgi - 25 Jul 2007 23:18 GMT > "Gwenhyffar Milgi" <gwenhyffar@yahoo.co.uk> wrote in message <snippety snip>
> Welcome to the club no one wants to join :-) > > It could be worse, he could be having delusions, wandering, being > disruptive. Well, he forgets a lot, argues, is generally morose, is terribly upset about "going mad", had an entire conversation this morning with my mother about something that he thinks happened last Saturday but actually never happened, but those are the things that we expect from his illness.
> I certainly wouldnt be trying anything to change his sleeping. Yeah, I told my mum at least it makes it easier for her not to have him under her feet 24/7, but it does seem to have gone very quickly.
> Your mother should be looking into long term care now, you might not need it > for some time, but I beliee that **in general** the earlier you get Az the [quoted text clipped - 3 lines] > 24x7 on their own, without eventually becoming stressed out and ill > themselves. She is, he'll be going to day care in September and she'll be getting home help for the days that he is at home. Once she cannot do it on her own anymore, that same center will take him full time. It is also set up to take him for the odd night here and there should she want to go somewhere or just want a night off. Basically, he's starting off on one day a week and as the need increases he'll go there more and more so that it's not a big shock once he has to stay there permanently. And it's a 10 minute bicycle ride away from where they live.
She's also getting support for herself, the hospital sees them both as patients, so them getting help will not only depend on his condition, but hers is also taken into account.
Fortunately the health system is reasonably set up here.
Unfortunately I'm on the other side of the country, but my mum and I chat a lot on MSN, almost every day.
> re the headaches, I think that is an issue for his doctor, dont recall > seeing it mentioned here before Yes, doctors are a bit of a problem. It's why we've known for a few years now that it was going wrong, but the diagnosis was only recently made. "Doctors don't know anything" and he is still lucid enough to be able to refuse to go. You can't trick him into it yet.
Still, he's faithfully taking his medication, he has it in a box in a little black bag which he checks every 10 minutes, they are are titrating him up on Exelon at the moment.
And he tells me a lot of stories from his youth that I've never heard before, so I guess there are good things to it as well.
Take care, Gwen
Evelyn Ruut - 26 Jul 2007 01:26 GMT >> "Gwenhyffar Milgi" <gwenhyffar@yahoo.co.uk> wrote in message > <snippety snip> [quoted text clipped - 56 lines] > > Take care, Gwen Hi Gwen,
Like Tumbleweed said, "welcome to the club nobody wants to join" :-)
Keep an eye out for the medication. A lot of people with alzheimers get their medications mixed up, because they forget they already took their pill that day, and will end up doubling up, or thinking they already took it, will skip that day. That happened quite early in my mother in laws illness, and it was part of what prompted us to take her to live with us.
About the other issues; the only problem that the sleepiness might present that I can see, would be if he got his days and nights mixed up and was getting up at 3 in the morning wanting breakfast, or something like that. Because of that kind of mixup, we used to try to somewhat discourage napping in the day, but everyone is different, and if he doesn't do that, it shouldn't be a problem.
Daycare is wonderful. I have no idea how we would have managed without it. It kept my mother in law occupied, and got her out of our hair for a couple of hours each day, which was a real blessing to us. I really believe that getting up and dressed and out of the house for that couple of hours, made a difference and kept her cognizant longer.
About the arguing and the moroseness, I don't know if you would consider him "depressed" but if he is, there are meds that can help with that. It is a rotten illness, and I think there are some who actually do realize how bad it is. Your dad may be one. My mother in law kept saying she wanted to kill herself, but once we got her on some antidepressants it did help a lot.
We loved hearing the stories from her youth too. My husband was fascinated by all of the stuff he'd never heard before. It is one of the few good things, but it also was the source of some of her worst delusions later on.
Good luck, and don't hesitate to ask anything here, or just to vent.
 Signature Best Regards,
Evelyn
Gwenhyffar Milgi - 26 Jul 2007 09:42 GMT > Hi Gwen, > > Like Tumbleweed said, "welcome to the club nobody wants to join" :-) Thanks guys, it's good to see all those replies waiting when you wake up in the morning and realise there's a group of people there who know what's going on.
> Keep an eye out for the medication. A lot of people with alzheimers get > their medications mixed up, because they forget they already took their pill > that day, and will end up doubling up, or thinking they already took it, > will skip that day. That happened quite early in my mother in laws > illness, and it was part of what prompted us to take her to live with us. My mum's on top of it, so thankfully that is not an issue yet. She simply doles out his pills into the box and then checks up on the box.
> About the other issues; the only problem that the sleepiness might present > that I can see, would be if he got his days and nights mixed up and was > getting up at 3 in the morning wanting breakfast, or something like that. > Because of that kind of mixup, we used to try to somewhat discourage napping > in the day, but everyone is different, and if he doesn't do that, it > shouldn't be a problem. He doesn't have them mixed up, but he sleeps more than he did. He can go to bed at 8 in the evening and sleep until the next morning. His hunger regulation is off kilter though. You can feed him a full breakfast and feed him another one an hour later and he doesn't know that he isn't hungry. Strange how that works.
> About the arguing and the moroseness, I don't know if you would consider him > "depressed" but if he is, there are meds that can help with that. It is a > rotten illness, and I think there are some who actually do realize how bad > it is. Your dad may be one. My mother in law kept saying she wanted to > kill herself, but once we got her on some antidepressants it did help a lot. I think he is depressed, but I think he was depressed well before he got this. My dad was never a happy person, that's not his nature. I have talked to my mum about anti-depressants, but the neuro-gerontologist doesn't want to add any medication until the Exelon is titrated up. However, she did say that they'll be starting something once that is the case in September.
> Good luck, and don't hesitate to ask anything here, or just to vent. Yeah, it's lovely just to post and know that the people on the other end know what you're going on about. I'm trying to be there for my mum mostly, and sometimes I have to push aside the fact that "it's my DAD ffs, my big strong dad who captained ships across the world's oceans and he can't even find his way around his home town anymore!". Still, my mum bears the brunt of this. She's still finding her way from wife to carer and it's really hard for her to lose her husband and gain a charge instead.
Thanks guys, all of you. Cheers, Gwen
august - 26 Jul 2007 03:52 GMT >> "Gwenhyffar Milgi" <gwenhyffar@yahoo.co.uk> wrote in message > <snippety snip>
> Yes, doctors are a bit of a problem. It's why we've known for a few years > now that it was going wrong, but the diagnosis was only recently made. > "Doctors don't know anything" and he is still lucid enough to be able to > refuse to go. You can't trick him into it yet. Tell him the Dr called and requested the new appointment or that he needs a checkup in order to get his medicines refilled. These both work for us.
> Still, he's faithfully taking his medication, he has it in a box in a > little black bag which he checks every 10 minutes, they are are titrating > him up on Exelon at the moment. Someone needs to be counting his pills, at least weekly, to make sure he is taking the correct amount on the correct schedule. Another reason for the headaches may be taking too many pills. Often the dementia person can not remember or has false memories of whether or not they took their pills, hence the checking on them every ten minutes. The frequent checking is probably a red flag that he needs his medicines doled out at regular times by someone else. When early on in the disease process we used to find bowls of hidden pills or find that she had taken multiple days worth, so I'd pay close attention to this, despite any complaints he may have. Also, the Exelon might be causing the headaches if these are a new development.
Even after all these years of pill taking, if asked my MIL still says "I don't take pills do I?".
> And he tells me a lot of stories from his youth that I've never heard > before, so I guess there are good things to it as well. Yes, my MIL loves to reminisce about when she was 11 years old and and would spend the day herding turkeys on her horse, Pal, along the Big Horn River.
Welcome to the group, AW
Gwenhyffar Milgi - 26 Jul 2007 09:36 GMT >>> "Gwenhyffar Milgi" <gwenhyffar@yahoo.co.uk> wrote in message >> <snippety snip> [quoted text clipped - 6 lines] > Tell him the Dr called and requested the new appointment or that he needs a > checkup in order to get his medicines refilled. These both work for us. Yeah, that's what I suggested to my mother. She's not quite up to plain out lying to him yet. His diagnosis is fairly recent, so she's still getting her head around it as well. I'm sure once she has come to terms with it a bit she'll see the wisdom of not being entirely truthful with him for his own good.
>> Still, he's faithfully taking his medication, he has it in a box in a >> little black bag which he checks every 10 minutes, they are are titrating [quoted text clipped - 10 lines] > close attention to this, despite any complaints he may have. Also, the > Exelon might be causing the headaches if these are a new development. My mum checks his medication, so he is taking it when he should. He doesn't remember taking his medicine, but he has a box with compartments which are not only marked with the days, but also with times of the day. So when he gets agitated about it he checks his box and then asks my mum "the yellow pill is gone, did I take it?"
He does take a lot of pills though, but 90% of those are for his heart.
Thanks, Gwen
Alan Meyer - 29 Jul 2007 20:35 GMT > ... > And he tells me a lot of stories from his youth that I've never heard before, so I guess > there are good things to it as well. Gwen,
You might want to record these stories or write them down. The time may not be too distant when these memories will no longer be accessible.
Alan
Mary_Gordon@tvo.org - 26 Jul 2007 01:47 GMT Gwen, is his blood pressure under control? If its high, that can be contributing to both the headaches AND the advance of the dementia, since high blood pressure ups the risk of strokes.
M
Gwenhyffar Milgi - 26 Jul 2007 09:32 GMT > Gwen, is his blood pressure under control? If its high, that can be > contributing to both the headaches AND the advance of the dementia, > since high blood pressure ups the risk of strokes. > > M Yes, it is. He has been on heart medication for quite a long time and his blood pressure has always been controlled.
 Signature -- Morality is doing what is right no matter what you are told. Religion is doing what you are told no matter what is right.
Alan Meyer - 29 Jul 2007 20:33 GMT >> Gwen, is his blood pressure under control? If its high, that can be >> contributing to both the headaches AND the advance of the dementia, [quoted text clipped - 4 lines] > Yes, it is. He has been on heart medication for quite a long time and his blood pressure > has always been controlled. I was thinking about that too. My Mom suffered from terrible headaches for years before and during her dementia. No specific cause was ever found, but she did have high blood pressure and high cholesterol.
In her forties she had an accident on a ladder and hit her head. We also wondered if the accident had anything to do with her later headaches and her dementia.
But, as is so often the case, the doctors were not able to make a diagnosis. We still have a huge amount to learn in medicine.
Alan
Baird Stafford - 26 Jul 2007 09:23 GMT <snip>
> He is on Exelon, and he is also on medication for his heart, as he had 3 > heart attacks 8 years ago (which we feel is what triggered at least his > vascular dementia). AFAIK, heart attacks do not automatically trigger vascular dementia. A heart attack happens in the heart while vascular dementia, as I understand it, happens in the brain - two different parts of the body. Now, a stroke, on the other hand, does seem at least to this layman to be a far more likely precursor of vascular dementia, since strokes *do* happen in the brain.
I suggest that you check with his doctor(s) before assigning causes, if only because effective treatment may vary as the cause of the illness.
Blessed be, Baird
Gwenhyffar Milgi - 26 Jul 2007 09:32 GMT > <snip> > [quoted text clipped - 14 lines] > Blessed be, > Baird Heart disease is actually indicated in the onset of vascular dementia and is most certainly a risk factor.
 Signature -- Morality is doing what is right no matter what you are told. Religion is doing what you are told no matter what is right.
Mary_Gordon@tvo.org - 28 Jul 2007 13:42 GMT I agree Baird - the heart attack didn't cause the vascular dementia - he had risk factors for cardiovascular disease, which leads to clots and other blockages (bits of plaque broken loose from blood vessels), and those in turn cause strokes and heart attacks.
A heart attack is a blocked blood vessel in the muscle of the heart that causes a portion of the tissue around it to die, and thus causes damage. Multi-infarct dementia or vascular dementia is caused by an endless series of small "infarcts" which are blockages, in the blood vessels of the brain. They can be so small they have no symptoms, but they are incidious, because the damage accumulates. They used to think TIAs (transient ischemic attacks) were harmless - i.e. they were a warning sign, but a person would completely recover from them). However, they know now, each of them causes some small bit of damage, and over time, it causes the person's brain to be more and more seriously impaired.
All you can really do is get control of those risk factors - blood pressure, cholesterol, smoking, blood sugar, weight. I would be getting those headaches looked into, since there is something going on there that I would be suspicious of in terms of stroke.
M.
June - 28 Jul 2007 14:38 GMT >I agree Baird - the heart attack didn't cause the vascular dementia - > he had risk factors for cardiovascular disease, which leads to clots [quoted text clipped - 19 lines] > > M. Hi.....My two cents here. Mom always had low blood pressure, exercised regularly and really took care of herself. She did have migraines when she was younger. I was just remarking to my husband that I can't remember her ever being in the hospital. I know she was when I was born but that was---well lets just say many decades ago. Because she went through early menopause, she did take hormones for many, many years. Who knows what causes vascular dementia. But I know in Mom's case it wasn't any kind of obvious heart problem.....June
Gwenhyffar Milgi - 28 Jul 2007 14:46 GMT > I agree Baird - the heart attack didn't cause the vascular dementia - > he had risk factors for cardiovascular disease, which leads to clots > and other blockages (bits of plaque broken loose from blood vessels), > and those in turn cause strokes and heart attacks. I didn't say cause though. I said triggered.
Vascular dementia is more common in people with cardiovascular disease. However, the fact that the first symptoms became apparent shortly after his 3 heart attacks is what leads us to believe that it triggered his vascular dementia. The state of his vascular system was at that time so compromised that as far as we're concerned that was the trigger event.
Cheers, Gwen
Mary_Gordon@tvo.org - 28 Jul 2007 15:50 GMT I guess what we're arguing about is what is meant by "triggered". There is a fallacy in logic called "post hoc, ergo propter hoc", which translates as "after this, therefore because of this". I don't think it follows that the heart attack itself CAUSED the start of the dementia because you started noticing the latter after the former. More likely is that when he had the clot or blockage that caused the heart attack, he had something similar happen in the brain at the same time (i.e. maybe even pieces of the same clot or piece of plaque broke off and travelled to his brain). Because of various risk factors he had/has a tendency to produce clots or lose bits of plaque that travel through his blood stream, and get stuck in various places - heart or brain.
One of my coworkers developed a tear in an artery quite accidentally (believe it or not, over vigorous rubbing with a towel on his neck). He developed a big clot he knew nothing about, and had a massive stroke followed by heart and lung problems when it broke apart and went travelling around his body. Yikes!
M.
Nina Pretty Ballerina - 30 Jul 2007 12:42 GMT > Hi guys, > [quoted text clipped - 26 lines] > > Gwen hi gwen
your story sounds a lot like my MIL caring for my FIL, only your mother seems to have a good plan for hte future. What we are finding hard is my MIL is hellbent on caring for FIL as long as she can, she feels that once she puts him in care he will go down hill fast, that is what happened with a friend apparently.
she does have him in care every Wednesday, they go on outings, he enjoys it, but he refuses to go for two days. ( i cheekily suggested she get up MOnday mornings and say, it's wednesday, off you go to activity group today, but she didnt go for it.....)
anyway, i say MIL is hellbent on caring for FIL at home, b/c she it realy is hell for her, and getting worse, and she is prepared to sacrifice some of her own good health for it. In sickenss and in health, for better or for worse as she sees it.
and yes, Gwen, this is a very lovely and caring group of people. strangers united by AD. Especially some people who have lost their LO, but still stay to offer support to those still in the midst. (you know who you are. Evelyn. :)
Best wishes
christine in oz
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