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Thank you for sharing that very interesting article. My mother died a few months ago from advanced dementia at the age of 91. But the dementia only became severe about two years earlier and basically took over the very severe melancholic depression that had led to her being admitted to a nursing home.
We initially tried to keep her oriented to reality but at one stage we completed a workshop run by the local dementia association. Their view was that it is pointless trying to correct them continually when the dementia is severe. They truly cannot remember what you said even fifteen seconds later and you inevitably get totally stressed out which leads to them getting agitated. They gave us ideas about how to get around the continual questions such as when are they going home. Suggested saying, oh when the doctor sees you and signs off. Which is a lie, but one they often easily accept, certainly my mother did.
But I hated lying to her although it became easier to deflect the conversation. All we aimed for at the end was to try to keep her calm. If she was not calm, she would try to hit the staff, she would scream that she hated us, she would hurt herself.
There is no good way to deal with this awful disease. Only bad options versus bad options.
One therapy that has lost its flair is "touch" reality. The use of "senses" to maintain that link to a safe environment for the patient. I tendered to a patient that by all accounts her "family" and Husband in particular thought her to be "regressive" in her childlike state. She babbled and spoke rather timidly. Like that of a child. More often then not she giggled and had fits to go along with her attitude. I didn't mind. Her family though seemed to be of the nature- She is an elder lady! Stop treating her like a child. None of us encouraged this fine lady of wonderment to be child like. It was the phase in her condition.
sometimes she just wanted someone to soothe her by holding her hand...( I imagine its very scarry for the afflicted sometimes) . Our Upper staff said that we should not upset the resident by mentioning any past times. Yet to this lady ...that was HER ONLY Memories! So to listen to her ...was a delight. She had this silly habit . Our carpets had this Hideous Floral pattern to it....and she'd meander to and fro down the halls...and lean over as if to be picking up these flowers. Then she'd pass these "imaginary" flowers ( though to her it was real). To this day when I am picking up tidbits out of the carpet before vacuuming...I lean over and recall Inez and her delight in picking up her flowers. When her condition got to the point where she could no longer speak ...and her body gave way.I can still recall sitting with her. Her blue eyes still begged to be "seen" and not be just a item to be rolled over,,,cleaned...bathed and fed. She was so much more deserving. Maybe I don't have the "inside" family dynamics of how families endure and have to adjust to loosing the person they knew.....I can imagine its indeed the long goodbye. I just know that when Inez departed this earth she still held out her hand as if to give one last flower from her hand. I smile thinking about her and if I am so incurred with such as my mind slips...I pray its with the same antics Inez had. Just strolling along...in wonderment....
I just lost my mother last month to dementia. In fact, her death certificate lists "senile degeneration of the brain" as the cause of death.
When she moved into what I'd call the middle stage of dementia, it became impossible - absolutely impossible - to reason with her at all. Her methods of coping with dementia became inscrutable to anyone outside her head. Though I felt incredibly sad for her, I also knew that practically speaking, there were going to have to be changes in her living situation that she wasn't going to like, because at that point what she seemed to like was living in complete chaos and filth, which was unlike her lifetime of owning and decorating and maintaining beautiful homes. She also began to intensely resist any attempt to get her to bathe, style her hair, wear clean clothes, etc. She looked like a bag lady and smelled even worse.
She still had her verbal abilities though, and her extensive vocabulary, and since she had always been an avid reader and an adventurous traveler, she had lots and lots of knowledge of distant places, the arts, museums, etc. Ironically though, she didn't want to talk much about those things (she did get reality and what she'd read very confused and I think that embarrassed her), but with her verbal skills intact, and her defensiveness and fear, she began really lashing out verbally, employing a lot of sarcasm and an oddly superior sort of behavior, which was very frustrating since she actually needed a lot more help with the most basic things - but she not only wouldn't accept it, she'd argue with and berate and belittle anyone trying to help her. It was very, very sad and very, very taxing.
It was also pitiful to watch her try to "scheme" and "escape" and figure out ways to "get her old life back" which she was convinced her family had stolen from her, first and foremost me - her caregiver.
Finally, the assisted living facility she was in told me that they could no longer meet her needs - that she needed to be transferred to a memory care center. Talk about feeling like Judas - I HAD to move her and there was no way she could live with me - she was too dirty, too dangerous to herself (she was a serious fall risk due to an earlier stroke as well as osteoarthritis), and too disruptive and dismissive of anyone else's schedule, needs, etc. She absolutely refused to take any meds, including her calcium tablets - there was simply no reasoning with her. So I had to find a place that would protect her from herself as much as possible, and give her as much safety and comfort as possible for the last chapter of her life.
I found a good memory care center and while I had her out for the afternoon, a moving company moved her belongings from one facility to the other. Then I had to take her over there, telling her we were just visiting it since her other complex had told her she had to move - and while she was eating lunch or something, I ran back to her room, hung her paintings, arranged her familiar furniture from home, pictures of loved ones, etc. I didn't bother bringing many books over because now she could no longer read. No TV because she couldn't understand any shows and didn't like the noise - that made no sense to her now.
I will never forget the chill that went down my spine when we walked into her beautiful new room, with her own gorgeous original oil paintings that she had painted hanging on every wall, and her familiar furnishings and belongings, and she said, "Well, this is a nice room - someone hung up some lovely paintings." I was leaving her there - with instructions from the staff to keep visits to 15 minutes once or twice a week for the first few weeks, to give her time to acclimate. She was used to me picking her up at least once a week to go out to eat, and she was also used to catching a bus to take her to church. She was never going to go to church again. I mean, it had run it's course - all she did was sleep during church, and she was wearing more and more bizarre things there - and she smelled bad as well so people knew there was something seriously wrong with her - but still - she enjoyed going and now that had come to an end for her.
I have never felt more horrible - never. This was a locked facility - beautiful but very secure. I knew she was never going to leave this place again.
Dementia eventually took just about everything from her life. She ended up dying in a hospital bed (we'd had to replace her beautiful antique bed with a hospital bed so it could be lowered to the floor since she began falling so often), in her one room apartment, in a gown which had been cut up the back because she was so difficult to dress, fighting everyone and everything, nearly blind, unable to talk, all her former beauty stripped away, down to about 90 pounds (she was 5'10"). Her husband of 57 years was dead, her two sons live out of state, as do most of her grandkids and great grandkids and sisters and their families, and though I live nearby, she died completely alone. I had been visiting her every other day or so, but while she was failing, it didn't appear that death was imminent. The facility called me the evening her breathing changed, and I was getting my shoes on, when they called five minutes later and said that when the aide realized her breathing had changed, and stepped out to tell the nurse and to call me, my mom died. So completely alone, in a room that was apparently unfamiliar to her. I wonder if she was afraid or even awake?
All I can tell you is that both my mom and my mother in law died of dementia, and in the end, the last year or so of their lives, it seemed cruel and pointless to argue with their perceptions of reality.
One thing I will say, that is at least SORT of positive about the whole process, is that at least when death does come for a loved one with dementia, there's more relief than sorrow in most cases. The process of dementia does allow us to say goodbye gradually. My dad died suddenly, and it was much more shocking. But honestly, in the long run, considering the alternative of dementia, his sudden death was better than the long, slow, excruciating decline of dementia.
That was a very interesting article. I don't consider it to be "lying" as much as it's our attempting to enter their world--for their comfort, even if it's only momentary.
Nothing broke my heart more than the sight of my mom, looking up at me, then asking in that same voice, Do you have a mother? I wanted to say, You're my mother!-- but I knew what I should say: that, yes, I had a beautiful mother.
I'm convinced that much of the anxiety early on comes from their beginning to not remember things which they think they should--the feeling that they're "losing it." In her nineties, mom started to forget some family members. I noticed her anxiety when I'd speak about them, so I eventually stopped. Once she forgot my dad, I knew what was coming next.
I saw a movie while in college, They Shoot Horses, Don't They? In it, characters are competing in a dance marathon for a prize. After not sleeping for some time, they're exhausted, and some begin to hallucinate. One woman thinks bugs are crawling on her, and screams relentlessly. Multiple people go up to her and tell her that there are no bugs, and that nothing's crawling on her. Then one woman approaches her, kneels beside her, and quietly begins brushing the "bugs" from her arms and clothing.
It's not "lying" in the conventional sense. And getting "into their world" is often the only thing which brings comfort to those out of touch with reality for any reason.
Thank you for sharing that very interesting article. My mother died a few months ago from advanced dementia at the age of 91. But the dementia only became severe about two years earlier and basically took over the very severe melancholic depression that had led to her being admitted to a nursing home.
We initially tried to keep her oriented to reality but at one stage we completed a workshop run by the local dementia association. Their view was that it is pointless trying to correct them continually when the dementia is severe. They truly cannot remember what you said even fifteen seconds later and you inevitably get totally stressed out which leads to them getting agitated. They gave us ideas about how to get around the continual questions such as when are they going home. Suggested saying, oh when the doctor sees you and signs off. Which is a lie, but one they often easily accept, certainly my mother did.
But I hated lying to her although it became easier to deflect the conversation. All we aimed for at the end was to try to keep her calm. If she was not calm, she would try to hit the staff, she would scream that she hated us, she would hurt herself.
There is no good way to deal with this awful disease. Only bad options versus bad options.
To a certain extent, it's a struggle to decide not only about the stress for the sufferers, but also for the family.
To a certain extent, it's a struggle to decide not only about the stress for the sufferers, but also for the family.
Yes, sometimes I would get angry because, unlike in many relationships, I had to make all the effort. I had to continually think about the most appropriate response to her questions. Appropriate meaning the answers that would least likely upset her, regardless of their effect on me.
The worst time for me by far was when she started to have delusions about close family members being dead or injured. I will never forget the shock when one day, my mother asked in a quite normal voice, how were "the mothers ". It came out that she believed, entirely without foundation thankfully, that all my little grandkids had been killed. I remember that I went running out of the room crying and whatever I should have said, I could not. After that she would believe that my brother was injured on the side of the road, or in hospital and that he was waiting for us to go and see him. One day, I said truthfully, no he is fine and will be here in five minutes to see you. When he walked in her response was to ask him how he had managed to recover so quickly. No amount of arguing or reasssuring would have any effect. I did wonder whether she had seen some television coverage of some of the mass shootings and or terrorist attacks overseas, but really we will never know.
At this stage she was referred back to one of the top geriatric specialists in Sydney and new combinations of medications were tried to settle her down. As the dementia progressed and perhaps the medications had some effect, this stage seemed to pass and for this I have never been so relieved.
Later when she would ask how was grandma, or her aunt, we would just say, eg oh just the same as usual. It became almost a game with my brother and me to work out a half truth that would satisfy her.
My mother told me several times she was losing her memory. It was apparent of course to me, but she noticed that she could no longer visualize my dad. This bothered her terribly. We had a pic of him on her fridge, and I mentioned it to her. But she was not satisfied. Actually, the picture was not that clear. In retrospect we should have put a better, clearer pic of him up in her room. But, you know, she never looked at anything in her room. So, maybe it doesn't matter.
I think I have posted about the time she asked me if I was one of her daughters. That certainly go my attention. But this was after having had a stroke. She was terribly confused for a few weeks after her stroke.
She did tell us some tales. She had us going a bit sometimes. When something happened at her ALF, she came up with really wild tales to explain it to herself.
But the craziest thing she ever said was to ask me if my dad had worked for the Secret Service!
Another time she told a bunch of people that "we" (including my sis and me) were all "Okies from Muskogee."
Which was not true. She was, but we were not.
So reality is not something people with dementia have much contact with. But I know that they can form some friendships when they are housed with other old people like them. And they do get used to routines. And once they have learned to accept help, they simply incorporate it into their lives.
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