Decline in dementia.

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Im trying to plait fog a little but I want to describe just some of the things that are indicators of decline in my mother who has alzheimers and vascular dementia (mixed dementia)Alzheimers by its nature is progressive and Vascular is too but they progress differently so what am I actually seeing and can I tell which is which. Well the answer to the last bit is no but I thought it might help to know what I have been through in the last six years.

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Oh Sue. ((((hugs))))
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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.
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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.
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Bringing this back up for someone whose Mom is declining....
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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.
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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.
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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.
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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!
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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?
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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?
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