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What did you notice when it was coming on? What challenges did you face over the long term?
Has anyone here had to deal with a parent with Dementia/Alzheimer's?
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Not a parent yet, but two grandparents (both grandmothers) started to get it. My dad is definitely getting more absent minded. My one grandmother was still herself, but just didn't know what was happening sometimes and couldn't recognize people. She had to go into full time care because she couldn't take care of herself anymore. My other grandmother became quite suspicious and paranoid. She'd freak out at my wife for going through her purse if she forgot who she was, even though she had asked her for her glasses or something. My wife was very patient with her.
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Yes....generally speaking, it sucks. It makes me impatient and frustrated and then I feel like an asshole for being impatient and frustrated.
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Yes even more so after my mothers husband passed and between her dementia and manic depression it was extremely difficult as I was just starting to get very ill myself and it was even made harder by my sister pretending that everything was okay and of course with my mothers paranoia she was very frightened that shew would be all alone. Which my sister took full advantage of and convinced my mother to write her will in such a way as to deny me any inheritance ( hurt for some time but thats life ) and it was difficult to take care of her needs as she had attempted suicide and was very close to the end.
And you could not ever convince them that you saw them only last weekend so it became a chore to try and take care of her needs while being chastised for not doing enough for her it was difficult and am glad she finally passed as she did not want to live anymore.
Not an easy thing to deal with and I wouldn't wish it upon my worst enemy it can drain a person to the core and then take a few more strips of flesh.
And you could not ever convince them that you saw them only last weekend so it became a chore to try and take care of her needs while being chastised for not doing enough for her it was difficult and am glad she finally passed as she did not want to live anymore.
Not an easy thing to deal with and I wouldn't wish it upon my worst enemy it can drain a person to the core and then take a few more strips of flesh.
My mother was living alone in a seniors apt. building in Toronto, (where she grew up). She was wearing an ID bracelet as a precaution. I got called a few times over a couple of years by kind strangers or police who found her, after she lost her way when she went shopping using public transport. One time she was emptying the mailbox and attempting to enter the house which she used to live in years ago. I then realized she was getting Alzheimer’s. I moved her into a seniors care center, where she would be supervised 24/7. I got power of attorney to manage her well -being. Over the course of a few years, she lost the ability to communicate through speech, or recognize anyone, and eventually just didn’t wake up.
Occasions of forgetting big things, or preparing for some imaginary event, are signs to be expected. You have to ensure that they are safe at all times. That is your biggest responsibility.
Occasions of forgetting big things, or preparing for some imaginary event, are signs to be expected. You have to ensure that they are safe at all times. That is your biggest responsibility.
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I lost my mother to alziemers and Parkinsons about 2 years ago now. It's not something I think I am able to discuss in a thread like this as is still feels pretty fresh, but if you want to private message I'll help any way I can.
Degenerative conditions are indescribable. The most I can say as far as long term, I don't know where my mom ended up, but at least her pain and frustration ended.
Degenerative conditions are indescribable. The most I can say as far as long term, I don't know where my mom ended up, but at least her pain and frustration ended.
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We are all here to support you. However, you need to get testing done and a diagnosis as soon as possible. My stepmother had Alzheimer's and my wife recognized the onset of subtle symptoms about 2 years prior to the diagnosis. (In all fairness, my wife was a practicing psychologist at that time.)
She went into long term care about one year following her diagnosis. My father was about 84 years old at that time and could care for her alone. The crisis that brought about her admission to a long term care facility was a fall at home followed by hospitalization. I went to the hospital that day and had to insist that she be hospitalized as my father could not provide the necessary care. The physician wanted to discharge her back to her home and my father's care. I refused to take her home.
As mentioned, assuring continuous personal safety is paramount.
You and your family will need all the support you can find. Personal care is emotionally and physically exhausting due to the level of demand placed on caregivers that are not trained and/or do not have the equipment needed to provide care.
The Alzheimer's Association is an excellent resource:
What Is Alzheimer's?
Take very good care of yourself and of each other.
Dave
She went into long term care about one year following her diagnosis. My father was about 84 years old at that time and could care for her alone. The crisis that brought about her admission to a long term care facility was a fall at home followed by hospitalization. I went to the hospital that day and had to insist that she be hospitalized as my father could not provide the necessary care. The physician wanted to discharge her back to her home and my father's care. I refused to take her home.
As mentioned, assuring continuous personal safety is paramount.
You and your family will need all the support you can find. Personal care is emotionally and physically exhausting due to the level of demand placed on caregivers that are not trained and/or do not have the equipment needed to provide care.
The Alzheimer's Association is an excellent resource:
What Is Alzheimer's?
Take very good care of yourself and of each other.
Dave
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These are all things my family did not do quick enough. In my case, my mom was in her 60's which means my Dad was capable of caregiving and took on way too much. We tried to help and make him realize more help was needed. But there's always an element of denial when it comes to loved ones I think and by the time he accepted things, he had done damage to himself. If things kept going that way, we would have lost them both. If there's any advice I can give it echos what Greco said. Sit down with your family and knowledgeable people and prepare for what is about to happen. Getting the needed help can be a slow process unfortunately.
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This is very important. Long term care facilities very typically have extremely long waiting lists. In addition, the process for choosing a facility is designed to meet the needs of many and will likely feel limiting and very frustrating when you are already fatigued and desperate.
There are agencies that provide ongoing care in the home setting...but the expense is significant. In addition, there might be the costs of equipment purchase/rental.
Unfortunately, this is a common and complicating related occurrence.
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Isn't that the truth Dave I have seen many just walk away from facilities because they just do not understand why they are not at home only to be found often many miles away lost and confused and some walk away just hoping to die. Breaks your heart watching someone we have know become a stranger in front of your eyes and its even harder for the grand kids of course because they only remember the good times had with each other.
I pray that my family doesn't have to ever go through that with me at times I wonder if I may be on the start or if its just my mini strokes that are taking parts of me away I just hope that it stays a slow process would like to keep my marbles and not loose them in Neverland. ( or maybe I already did and just don't know it )
I pray that my family doesn't have to ever go through that with me at times I wonder if I may be on the start or if its just my mini strokes that are taking parts of me away I just hope that it stays a slow process would like to keep my marbles and not loose them in Neverland. ( or maybe I already did and just don't know it )
Having taught gerontology courses that addressed dementia, and the various forms of caregiver burden, I got to hear some pretty heart-rending stories in class from those whose interest in the area was prompted by bearing that very burden. It's a tough thing for an adult daughter to have to wash shit off the father who was always a hero to her.
A couple of things to note:
1) There are many different forms of dementia, some progressive, like Alzheimer's, and some that can be stable, like multi-infarct dementia (i.e., an accumulation of little strokes). Assuming it IS dementia of some sort (and that requires professional confirmation), that does not necessarily imply continuing decline.
2) Older adults take a whole lot of medications (I have to pop 8 pills in the morning and 5 at night), which can sometimes result in clouded thinking, either because the drugs interact with each other or with something else the individual does or ingests, or because the "best-guess" dosage is too strong, because an inappropriate drug is prescribed, or because the individual simply isn't taking them properly.
3) Dementia is easily confused with depression in later life. There are constant workshops for psychiatrists and neuropsychologists on how to tell the difference, because they can get mixed up. Depression in later life can look like dementia. At the same time, people can become depressed secondary to actual loss of mental ability (i.e., I'm losing my abilities, and it's depressing).
4) People can be more forgetful in later life for a bunch of reasons, many of them normative, and some unrelated to dementia. A late friend of mine complained to me about becoming more forgetful, and it turned out to result from an inoperable brain tumour. Having done my doctorate in cognitive aging, and attended several conferences in the area, small progressive decline in remembering, in the absence of any neurodegenerative disease, is quite normal.
5) People who ARE dementing from Alzheimer's tend to deny their mental errors and forgetfulness when it starts to come on with greater than "normal" frequency, for conspicuous things. So much so that clinicians often find spouse's reporting more accurate and predictive than the affected individual. At the same time, a great many seniors make a bigger deal of simple memory slips (committed by college students just as often) than they need to, because it worries them.
6) To the best of my knowledge, there is no straightforward litmus test of clinically significant forgetting. Everybody forgets stuff, forgets to do stuff, forgets what they were just saying, why they are standing with the fridge door open, what that guy's name was, etc. Indeed, whenever I see a magazine feature piece on "the tragedy of Alzheimer's" (generally during a slow news week), the descriptions of kinds of things forgotten are not one iota different from what happens frequently to persons in their 20's. The difference is not in type, but in frequency. My father, who was not demented in the slightest, would sometimes accidentally call me by my sister's name. But he would not continue to do so again and again over the course of the same day.
A couple of things to note:
1) There are many different forms of dementia, some progressive, like Alzheimer's, and some that can be stable, like multi-infarct dementia (i.e., an accumulation of little strokes). Assuming it IS dementia of some sort (and that requires professional confirmation), that does not necessarily imply continuing decline.
2) Older adults take a whole lot of medications (I have to pop 8 pills in the morning and 5 at night), which can sometimes result in clouded thinking, either because the drugs interact with each other or with something else the individual does or ingests, or because the "best-guess" dosage is too strong, because an inappropriate drug is prescribed, or because the individual simply isn't taking them properly.
3) Dementia is easily confused with depression in later life. There are constant workshops for psychiatrists and neuropsychologists on how to tell the difference, because they can get mixed up. Depression in later life can look like dementia. At the same time, people can become depressed secondary to actual loss of mental ability (i.e., I'm losing my abilities, and it's depressing).
4) People can be more forgetful in later life for a bunch of reasons, many of them normative, and some unrelated to dementia. A late friend of mine complained to me about becoming more forgetful, and it turned out to result from an inoperable brain tumour. Having done my doctorate in cognitive aging, and attended several conferences in the area, small progressive decline in remembering, in the absence of any neurodegenerative disease, is quite normal.
5) People who ARE dementing from Alzheimer's tend to deny their mental errors and forgetfulness when it starts to come on with greater than "normal" frequency, for conspicuous things. So much so that clinicians often find spouse's reporting more accurate and predictive than the affected individual. At the same time, a great many seniors make a bigger deal of simple memory slips (committed by college students just as often) than they need to, because it worries them.
6) To the best of my knowledge, there is no straightforward litmus test of clinically significant forgetting. Everybody forgets stuff, forgets to do stuff, forgets what they were just saying, why they are standing with the fridge door open, what that guy's name was, etc. Indeed, whenever I see a magazine feature piece on "the tragedy of Alzheimer's" (generally during a slow news week), the descriptions of kinds of things forgotten are not one iota different from what happens frequently to persons in their 20's. The difference is not in type, but in frequency. My father, who was not demented in the slightest, would sometimes accidentally call me by my sister's name. But he would not continue to do so again and again over the course of the same day.
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My father was diagnosed at a fairly early stage. We first noticed his driving was not good. It was unsafe. He ran a family business that we all worked in and he became increasingly incapable of making sound business decisions. My mother talked to his family doctor who had him tested at a clinic at UBC. It took several months before they decided it was probably Alzheimers. Try and get the affected person tested as soon as possible. There are treatments that will give the person a few more "good" years. Eventually the side effects from the drugs will get bad and they'll have to discontinue them but for a few years they will help. When my father accepted that he had Alzheimers he was able to arrange his finances and ease out of the business gradually. It was another eight years before my father had to go into a home. He probably should have gone after six but my mother wouldn't hear of it. It is very, very hard on the primary caregiver. The primary caregiver needs as much if not more help than the patient. If you are the primary caregiver seek counselling sooner rather than later. If someone else is the primary caregiver give them all the help you can. They need breaks. Even if you can only stay with the patient for a few hours at a time those hours will be precious to the caregiver.
If the patient accepts their condition it is a big help. My father loved golfing but when he got to the point where he no longer could I would take him to the driving range. He would laugh and joke about how if he could only remember where his golf ball went after he hit it he could still golf. He got moody but his sense of humour was usually there. Treasure whatever moments like this you can grab.
If the patient accepts their condition it is a big help. My father loved golfing but when he got to the point where he no longer could I would take him to the driving range. He would laugh and joke about how if he could only remember where his golf ball went after he hit it he could still golf. He got moody but his sense of humour was usually there. Treasure whatever moments like this you can grab.
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This is exactly where we're at, among other things. Trying to get to the doctor is the major challenge we're facing.
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I am quoting this for the sake of emphasis.
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My mother passed away just over 4 years ago. She was not the same person for the last bit of her life. Visiting her was a chore. The same story being repeated every 10 minutes. Her passing was a relief in some ways for everyone, particularly my father.
There is a meme that goes around questioning why a spouse would visit when the patient can't remember who they are, the answer being "because I remember who she is". It's a tough row to hoe.
There is a meme that goes around questioning why a spouse would visit when the patient can't remember who they are, the answer being "because I remember who she is". It's a tough row to hoe.
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All I can say is persevere. Our health care system is not geared up for this. My mother had to fight both my father and the system to get him tested. Once he was diagnosed it was still a struggle with system, which is overloaded. Things move at a glacial pace but they do move. It was almost two years from when the family started talking amongst ourselves about what was wrong with Dad until he was diagnosed. If the patient is still driving make them stop. This is what finally convinced my father something was wrong and he agreed to be tested.
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I was hoping that this was not the scenario across the country for the sake of the "patients" and their families.
This is so unfortunate and frustrating...and so accurate.
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Many years ago, we lived on a country property across from people who had a hobby farm. For many years, I would see the farmer walking down to the barn to do his chores looking after the animals. We didn't see much of him during the winter months because we were not outside that much. One spring, as I was getting outside more often. I saw him walking down to the barn and noticed he was not swinging his arms as he walked and his arms hung down at his sides. I thought it was strange but never thought any more about it. Eventually, we became aware that he had Alzheimer’s. His wife looked after him at home until she herself ended up in the hospital. It was after that, that he went in for long term care until he passed.
First, sage advice from yourself and all who have commented.
Second, let's compare this to troubleshooting an amp or pedal. The first step in the art of troubleshooting is to be able to say with confidence "It's not that", so that you can rule out distractions and sharpen your focus. I realize persuading the individual to go in for testing can be difficult, because they can perceive it as an accusation of sorts. Perhaps they can be persuaded more easily by the suggestion that one simply wishes to know "it's not that", so that you don't have to worry about it anymore. Nothing wrong with not having to worry, or helping someone to not worry when they don't need to worry. Pitch it as "My problem is I'm worried you might have a problem, so let's go fix my problem by getting you tested". That removes the implied accusation that the parent is slipping. And who knows, it may turn out to be that the problem isn't early stage dementia.
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