Decline in dementia.

Hi Phoenix, my mom has never had a definitive diagnosis but I am certain vascular dementia plays at least a part. Mom has presented with a lot of physical symptoms that would put her much farther along the Alzheimer's scale early on than she actually was, so sorting it all out is a challenge!

It all started with a fall or two and we got Mum walking sticks. She was a little forgetful but aren't we all at that age (mum was 88 then). She has always been narcissistic and demanding and I could never please her so when she had a major fall and couldn't live alone any more I gave up work to look after her. In hindsight that was probably one of the worst decisions I ever made but hey everyone can have 20/20 vision in hindsight!

Things weren't easy and Mum became increasingly demanding and difficult if I didn't 'jump to it' straight away. In a fit of temper (because I wouldn't do something immediately) she threw the laundry down the stairs then attempted to clamber over it and fell, breaking her hip. And so the nightmare began.

Eventually when Mum had driven me mad over what day what time what month what year it was and I mean asking me 6 or 7 times an hour I recognised it as dementia and called the doctor for a diagnosis because I was now sure it wasn't just 'her getting older' as the docs had said before.

Tests indicated (not proved tests like that cant be done until after death - much use that is to the carer!!!) that Mum probably had mixed dementia alzheimers and vascular from the fall and the fact she probably fell due to a Transient Ischaemic Attack (often called a mini or micro stroke or a TIA for short)

She was prescribed donezepil (many people cant take this for it can have interactions with medications or simply that hey have an adverse reaction to it) and after about a month I noticed a real difference. No preoccupation with time and almost back to normal apart from her mobility but a wheeled walker sorted that out for her.

The consultant spoke to me about expectations for the future and they weren't good. Gradual progression of Alzheimers plus the step down of vascular dementia. I wondered what to expect and he told me this. No-one can tell you what it will look like it is different for every single person. There are recognised phases but not every person goes through each one or indeed in the same order.

Now I am a logical person and this simply didn't compute to me at all. Im not going to go into the phases because they are widely found on the internet but just to tell you the progression of one woman and I am going to list it so you know what to expect possibly at some time maybe but then again maybe not!! For such is the nature of dementia

Over the first 3 years and remember this can be much shorter for a lot of people or longer for some

First off forgetful
Anxious
Dependent
Needy - increasingly so
Minor urinary incontinence
Increased anxiety, anger and non acceptance of the disease when some young idiot of a doctor decided she ought to know even though I had TOLD him not to tell her
Demanding - increasingly so
Totally self centred and unable to mask it unless of course a doctor was present!
Lots of near misses when it comes to falls almost always centred around toiletting whether it be needing the toilet or having just been
Needing to be showered by me
Difficulty preparing a cup of tea and not able to make meals

Then over the next 2 years

Then came a set of urine infections and a massive step down -
Completely bladder incontinent and bloody angry about it
If it is possible even more self centred and totally disregarding of other peoples needs at all
Demand for me to stay with her 24/7 - (don't do it you would go mad) and not leave the house ever (that didn't happen either)
Inability to use phone
Couldn't follow an instruction verbal or written or in picture format
Slept much more of the day (and compensated by staying awake half the night and that is hard for carers)
Demanded I take an interest in her likes (nope never gonna happen)
Tried to exert control more than ever in an effort I imagine to try to keep the tight rein which would prove to her she didn't have dementia
Became quite low from time to time and 'woe is me' even though I was bringing her friends to visit twice a week
During this time several more urine infections because she wouldn't drink enough
Several impacted bowel issues because she would rather stuff her face with junk than real food - they are hard to deal with
More TIAs some while she was awake and some very evident in the morning after she had slept but TIAs can come whether awake or asleep
Decline in mobility from wheeled walker to frame
Unwilling to wash and dress hwerself

And now

Tired very very quickly
Refuses to walk
UNABLE to wash and dress herself
UNABLE to know whether she has had a bowel motion when sat on the commode
Very very unsteady when stood
Increasingly hard to get her to turn
Cannot get her into a car because she cannot follow instructions
May or may not know who I am although mostly does know
Has to be told firmly to drink or she wont
Has to be TOLD firmly to eat a meal or she wont
Uses any excuse to avoid eating all of which require me to test the water

Hiya cwillie its that impossibility of determining what is old age and what isn't that is causing many of the problems I think. If they ever find a means to scan for the issue life will hopefully be a lot simpler but in all honesty I am not sure that prolonging deterioration is a step forward. Find a prevention please but not something that will just prolong the inevitable for this is not an easy route for sure ...... getting old is not for sissies

Is she wheelchair bound now, or can she still walk when you help her?

I'm sorrry Phoenixdaughter, it looks like your mom's Alz and dementia has picked up the pace as far as progressing.

cwillie

I think Phoenixdaughter mentioned she can stand but is very very unsteady, so she is more than likely wheelchair bound.

So 5 years down the road, there are no hallucinations? That makes me think this is not Alzheimer's at all. If she is 93, every day is a gift from God

Pam not all people with Alzheimers have hallucinations...some do some dont. It is far more common in people with Lewy body dementia and/or Parkinsons (the two seem to be closely linked) Mum only has hallucinations when she gets a urinary tract infection and I can assure you she most definitely has Alzheimers. It has been confirmed by 3 consultants ... all specialists in that field.

Cwillie she is wheelchair bound but can manage to stand and turn with a lot of help. The main problem being she thinks she has turned but her feet are just padding on the spot as it were. Toiletting is increasingly difficult obviously and getting her into bed quite an effort but I manage - some days not so well as others. I keep repeating the mantra it is not her , its the disease....some days thats not as effective as others though

My mom, too was diagnosed with Alzheimer's and she most definitely experience hallucinations and delusions. The Alzheimer's Association also has this article related to hallucinating in Alzheimer's.
http://www.alz.org/care/alzheimers-dementia-hallucinations.asp

Unfortunately, there is not a rule book on how dementia is to progress in anyone. Each experience is different, no two are the same.

I think we have to recognise that there isn't a one size fits all. Mum certainly mistakes things but it isn't an hallucination. Her vision is decreasing and things become blurred and yet still somewhere in that brain is the desire to seem normal so she says of course it is this that or the other when in fact it is something quite different. If I can I try to clarify with her what she is seeing and we usually get to the right thing. There is a good piece on visioperceptual errors

I can't imagine how you hang on like you have, as we are only beginning the journey into Dementia with my FIL, and it isn't wasy. Thank you for sharing your journey. It only reinforces the fact that my husband will not be able to manage his Dad for much longer, as he is ill equipped to deal with it, and I know that I am not!

I pray thet researchers come up with a cure and a vaccine, to help those of us with a family history, though I'm not sure one has to have a family history. So many before, never lived to such great ages to have been diagnosed with Alzheimer's/Dementia as they are now. Modern medicine is keeping people alive so much longer, but to what end?

I can remember Mum saying, a long time ago, that people who had dementia shouldn't have the right to die and I utterly support her viewpoint.... FOR HER....it is not the way I feel as many will already know. However interestingly my mother now asks me to kill her almost every day despite having been prescribed quite high doses of antidepressants. She isn't depressed she is fed up of living, but how the hell do you make a doctor see that?

While my FIL does not say things like "kill me", he often says "I'm done", and " he's lived his life and has done everything he ever wanted to do", and he's "ready to die", but take him into the Dr's office and its SHOWTIME! He shows no interest in the outside world, and would prefer it if we didn't either! He very much concerned about his Rx's, Dr appointments, follow up tests, but Zero concern for our own Well Being! Ever! Yes, he's still with it enough for that!

If we do leave him for an hour or two, he's very concerned about when we will be back, and how long we will be gone, and it isn't fair, but there you have it. I know what it's like to feel imprisoned in your own home. Often times, my husband and I have to go out to visit with our own kids on our own, individually, as we cannot leave him alone longer than 2 hours, so somebody can be home with him. No, after his recent fall, when we were no home, even though I called him to say we would be back With Dinner in 15 minutes, he just could not stay put for those 15 minutes, he got up anyways, fell and could not get up, and had to lay there until we arrived home. So he's not safe to leave home alone any longer.

Im still not sure Why he felt he couldn't wait for us, On one hand, I want to say, "is it Senility, Dementia?" Or he or was just being "obstinate", but it doesn't really matter, he fell, and now we are stuck with the alternating outings plans for hubby and I, until further accommodations can be made for him.

Narcissistic, mental decline, Dementia, it all adds up to him controlling our lives whether intentional or not. With the games we've been privy to over the years, he's still getting his way.

Time to actually do something about it! And that's not easy either! The responsibility, the guilt, the What the h*ll do we want to do with the rest of OUR LIVES? It eats you up! Add in feeling like you've failed him in his aging decline, just Sucks! Its not our fault he's old!

We can place him, but we will still be Responsible for him! While the other 2 siblings blissfully unaware, continue to live their lives unencumbered.

Why does your life need to put on hold for years and years? Why didnt/doesn't he recognized this and say "ENOUGH !" He is still "WITH IT" enough to know that we aren't happy in this situation! Why do they choose to keep us captive, after everything we've done for them?

And he knows that these past 13 years weren't the only caregiving we've done, there were many years before he moved in, that we were helping to care for my own very sick parents! I do know, that he never spent even one hour caring for his parents! Now that's a Narcissist!

I know that I would never do this to one of our kids, and we've repeatedly told them all this! Please, never take on the task of caring for 24/7/365, for a parent. Resentments build, and eventually, you burn out So Bad, that it becomes an impossible situation. There you have it. It SUCKS!

And that in a nutshell is exactly why I started this STacey as I know you know honey. Your road is so different to mine yet it is still taking its toll. Your FIL's need to control is like my mother's. Oddly they never seem to lose that need...if anything it strengthens. Mum's consultant told me that while they have absolutely no idea why, it seems that personality traits become magnified as some (NOT ALL) dementias progress. I think in our cases Stace that that, of course, has not been for the better and you're dead right.... it does suck.

What sucks even more is that way way back in 1966 people were living way past 70 and it cannot have been rocket science for ANY person to recognise that alongside a growing elderly population would come greater need for support for them in terms of care. Has ANY government in ANY country addressed this?

They sure as h*ll haven't in USA and UK. Where I live in the UK they closed the ONLY respite centre we had locally. I swear if one more 'professional' person tell s me I am doing a good job and I need help I will swing for them. Do they think we are that stupid we don't KNOW how much we save our respective governments.

I do get paid by the UK government to the tune of £61.25 a week - for 168 hours a week. I shop on line I do everything on line because I cant leave mum unless she is in bed at night (which doesn't happen until about 12 and even then it is not guaranteed she wont call me - it is usually about 4 times a night I have to get up with her.) The level of care I give Mum would cost in excess of £1000 a week here. Mum has needed care for over 5 years now and even if we had sold her house and moved her into care the government would now be footing the bill.

So in those 5 years I have looked after Mums needs. But in doing so I have destroyed my pension, lost my equity, my friends and my life. Is it any wonder that I am resentful. I don't resent my mother (although sometimes it does feel like that)...I resent the lack of support that I am proffered when trying to do my best without going mad. I resent being put in a position whereby I will lose any future I have because I took on the role of carer for my Mum and DIDNT put that burden on the state.

Our Ontario provincial government gives a lot of lip service to the problem the burgeoning senior population but their solutions seem to me disingenuous. There is a great emphasis on "helping" older individuals return home from the hospital more quickly, but in reality they are anxious to move these "bed blockers" out of expensive acute care settings and they totally fail to give them adequate supports once they are at home. The province will pay for "up to" 60 hours a month in home care (and good luck getting any where near that), but at the same time those who oversee the system are faced with rationing care as demand outstrips the budget supplied.
Rant over.

Cwillie I know exactly what you mean. To qualify for free 3 hours a week respite we need to have a financial assessment - Im still waiting - 9 months and counting. I am firmly of the opinion that I will get one if I say that's it, I'm done or if I am the one who gets sick. Until then I am just the easy way out for them.

Bringing this back up for someone whose Mom is declining....

My mom is in decline, she has alzheimers and vascular dementia. Recently had a echocardiogram, heart valve is narrowing. Saddens me, how I see the decline on a daily basis now.

We just brought my mom home to live with us due to the rent at the memory care center increasing. The saying that you never know someone until you live with them is so true. Just visiting her once a week for a couple of hours, I had NO IDEA of the amount of care she needs and the rapid decline she's in.

Phoenix Daughter,
My mother is in stage 6, they sound very similar in their abilities (or lack of). In the last month, she's become a lot more unsteady, unable to sit down or get up from sitting without full assistance, starting to have swallowing difficulties with thin liquids, wants to sleep all the time, unable to turn or roll over when asked, doesn't have fine motor skills to to cut up food anymore, will eat when served or hand fed, hard to hold sandwiches, better with a spoon than a fork, incontinent of urine but can tinkle some on the toilet, holds bowels until we get to the BR, very weak and can't "drive" the walker, I have to stand behind her with my hands under her arms and steer the walker to the desired direction, she would fall over if left in a standing position.

I'll assume that she won't be mobile within 3-6 months. We have a 'transfer' w/c, (the kind with all small wheels) but I'm not sure I can transfer dead weight anymore. I did that with a patient and my back took 2 years to heal.

CaregiverBoone,
It is so sad to watch the decline, it seems to get a bit worse every day.
It is like having a 1 year old at 60 (my age). I'm pretty sure I'm too old for this.

Stacey,
We are giving up a part of our lives to caretake. When you can no longer function (mentally, emotionally, physically) as the c/g, you need to back away. It's normal to have resentment when you can't lead your life as you had planned. People are just living too long and are requiring more care than 50-60 years ago, when the average age to die was in the 70's. And no one seems to have planned for long term elder care. God knows the government is stretched to capacity with all these seniors.

I would love to have a "time line" of what to expect in the coming days, weeks and months, but, as was said, everyone is different. I do not look forward to getting very old. I will do everything in my power to not succumb to dementia.

It just helps to have a sounding board in this forum. God help us all.

Oh Sue. ((((hugs))))