Losing Loved Ones to Dementia
- Thread starter Keesha
- Start date
Warrigal
SF VIP
- Location
- Sydney, Australia
Yes. My mother, mother in law and a couple of childless aunties.
I don't believe I ever lost them. They were still there inside a fog of confusion. I began to understand that they were lost in time and space but could be reached by encouraging them to talk about their past. Their memories were good ones and very sustaining.
Because I knew their stories very well I would start conversation with 'Do you remember when...' while we shared a cup of tea. This ploy would allow them to recall old stories and we would often have a good laugh together.
When conversation was no longer possible I would sit beside my mum doing some knitting. I knitted many scarfs at that time. It seemed to be a means to be together without needing to talk. Then when it was time to depart I would never say, 'Goodbye'. I would simply say something like, 'I have to go now because I have to take the washing off the line'. Mum could accept this reason for me leaving and never made a fuss. I would assure her that I would come back in a day or two to see her, which was the truth.
I don't believe I ever lost them. They were still there inside a fog of confusion. I began to understand that they were lost in time and space but could be reached by encouraging them to talk about their past. Their memories were good ones and very sustaining.
Because I knew their stories very well I would start conversation with 'Do you remember when...' while we shared a cup of tea. This ploy would allow them to recall old stories and we would often have a good laugh together.
When conversation was no longer possible I would sit beside my mum doing some knitting. I knitted many scarfs at that time. It seemed to be a means to be together without needing to talk. Then when it was time to depart I would never say, 'Goodbye'. I would simply say something like, 'I have to go now because I have to take the washing off the line'. Mum could accept this reason for me leaving and never made a fuss. I would assure her that I would come back in a day or two to see her, which was the truth.
terry123
Well-known Member
- Location
- Houston, Tx.
My sil's mother has it and she does not know who I am now when I call. When she was well we would exchange scratch offs and laugh about them. She would send me Florida ones, I would send her Texas ones and my sister would send her La, ones. We enjoyed the conversations the 3 of us would have. She is now not sure who we are so we still call but try to watch what we say.
it has to be the worst of illness' just the thought terrifies me 'cannot recall anyone in close family with it'
but many friends had parents with this -to lose the mind is beyond words for a human being ...in years to come but not in my time there will be a cure -look what they have done with aids now -- medicine' we have so much to learn but it all takes time ; life is so cruel for anyone who has it ...
but many friends had parents with this -to lose the mind is beyond words for a human being ...in years to come but not in my time there will be a cure -look what they have done with aids now -- medicine' we have so much to learn but it all takes time ; life is so cruel for anyone who has it ...
C'est Moi
Dishin' it out.
- Location
- Houston Y'all
My 85-year old MIL is showing the first signs; she is forgetful and has to be monitored with her medication. So far she is still herself and recognizes people, but we definitely see the decline in the past year or so.
My grandmother had mini strokes that left her with dementia. Even though it's not funny she was a bit comical when she would say "I just came up from having a smoke in the basement". It was her old house that had a basement and not the one she was living in then. She's been gone a long time. I'll never forget the last time I saw her. She was curled up in a ball and she could not speak coherently anymore. She passed soon after. 
My only advice is to see what they still have and not what is gone.
My only advice is to see what they still have and not what is gone.
Warrigal
SF VIP
- Location
- Sydney, Australia
I fully expect that if I am not carried off by a coronary or stroke that I will succumb to senile dementia. The thought does not terrify me at all. I am content to accept it if it is to be my fate.
jujube
SF VIP
When my grandmother descended into dementia, I found it much easier on her to indulge her fantasies.
When she'd mention having lunch "yesterday" with her next-door neighbor (back in her home state and who had been dead for 20 years), I asked how the neighbor was and what they had for lunch. We'd reminisce about how Mrs. Smith grew the best roses in the neighborhood and how fat she was getting. Grandma could talk for hours about all that.
When she'd mistake me for her younger sister, she'd be happy to see her again and I'd be happy to see my Grandma happy. Win-win.
There is a strong school of thought that the dementia patient should be constantly "oriented" to the present. WHY? What's in the present that's so pleasant that they'd have to swim up out of their "fond memory pool" to face? The room in the nursing center that's home now? The slop that's the only thing you can eat now? The aches and pains and indignity that is your daily life? Why not just let them wallow in their memories, when life was better?
OK, off the soapbox. I hope, when the time comes, I go fast.
When she'd mention having lunch "yesterday" with her next-door neighbor (back in her home state and who had been dead for 20 years), I asked how the neighbor was and what they had for lunch. We'd reminisce about how Mrs. Smith grew the best roses in the neighborhood and how fat she was getting. Grandma could talk for hours about all that.
When she'd mistake me for her younger sister, she'd be happy to see her again and I'd be happy to see my Grandma happy. Win-win.
There is a strong school of thought that the dementia patient should be constantly "oriented" to the present. WHY? What's in the present that's so pleasant that they'd have to swim up out of their "fond memory pool" to face? The room in the nursing center that's home now? The slop that's the only thing you can eat now? The aches and pains and indignity that is your daily life? Why not just let them wallow in their memories, when life was better?
OK, off the soapbox. I hope, when the time comes, I go fast.
A2ZGrammie
Member
- Location
- North Carolina
Dementia is rough. I have a special person that is just starting to go through the process, and I'm not sure how to deal with it.
I have been a caregiver to people with dementia in the past, and it is a very hard disease to deal with, and I think there is no understanding it. All you can do is try to be patient. When my mother was getting very ill, I would listen to her tell me stories that she had already told me three hundred times. Now I am starting to do the same with my children. I'm trying to control it. I don't want to have the same thing happen to me.
I have been a caregiver to people with dementia in the past, and it is a very hard disease to deal with, and I think there is no understanding it. All you can do is try to be patient. When my mother was getting very ill, I would listen to her tell me stories that she had already told me three hundred times. Now I am starting to do the same with my children. I'm trying to control it. I don't want to have the same thing happen to me.
AZ Jim
R.I.P. With Us In Spirit Only
- Location
- SURPRISE, ARIZONA
My younger brother has it and is slipping fast. My SIL has to watch him full time. Has to lock the gates on the property or he'll wander off. God bless the caregivers...
My aunt died from Alzheimer's in a nursing home, I was young then and never saw her that way. She was living with family who could no longer care for her, she was never married. I think about getting it, I am more forgetful now in my old age than when I was younger. I think I'd rather suffer from any physical disability other than mental dementia to the point of not knowing myself or my loved ones and not being able to care for myself.
StarSong
Awkward is my Superpower
- Location
- Los Angeles Suburbs
My mom had vascular dementia and my FIL is moving along the Alzheimer's continuum. It's not easy for us and is worse for them.
I like @jujube's style. Why indeed are we told to reorient them to the here and now, particularly if their current lives are limited and mundane? As long as they're not putting themselves or others in harm's way, what does it matter what decade their brains are in?
I like @jujube's style. Why indeed are we told to reorient them to the here and now, particularly if their current lives are limited and mundane? As long as they're not putting themselves or others in harm's way, what does it matter what decade their brains are in?
Warrigal
SF VIP
- Location
- Sydney, Australia
The tipping point is when they start talking about dead relatives as if they are still here. This is just a short step away from them deciding to go looking for them.
My MIL lived in a villa a few houses from me and I could keep an eye on her every day. Her short term memory was very poor and one evening she had a fall that injured her collar bone. I found her the next morning but she could not remember her fall. After that I had to be there every morning when she woke because she could not understand the reason for her pain.
She also had a recurring hallucination of a little red headed boy. I would enter her villa and there would be cushions on the lounge covered with a rug and she would tell me that he was asleep. This concerned me but my daughter who is a nurse with experience of home visitations told me not to worry because people with this stage of dementia could still stay in their home as long as they were not a danger to themselves. She was receiving meals on wheels and I would check to see that she was eating them and also had her eat with us fairly often. She and I liked the same foods. A neighbour would tell me what was happening as well.
It was only when she began to talk about her dead sister that I became alarmed. I had been on extended leave from my teaching position and was soon due to resume duty. We had a family meeting and decided that now was the time to start looking for a suitable placement. We found a very well run hostel for people with dementia. Each resident had their own bedsit with ensuite and a lovely garden that they could access but the entrance was always securely locked for their safety. A few years later we needed the same facility for my mother who was at risk of wandering.
My MIL lived in a villa a few houses from me and I could keep an eye on her every day. Her short term memory was very poor and one evening she had a fall that injured her collar bone. I found her the next morning but she could not remember her fall. After that I had to be there every morning when she woke because she could not understand the reason for her pain.
She also had a recurring hallucination of a little red headed boy. I would enter her villa and there would be cushions on the lounge covered with a rug and she would tell me that he was asleep. This concerned me but my daughter who is a nurse with experience of home visitations told me not to worry because people with this stage of dementia could still stay in their home as long as they were not a danger to themselves. She was receiving meals on wheels and I would check to see that she was eating them and also had her eat with us fairly often. She and I liked the same foods. A neighbour would tell me what was happening as well.
It was only when she began to talk about her dead sister that I became alarmed. I had been on extended leave from my teaching position and was soon due to resume duty. We had a family meeting and decided that now was the time to start looking for a suitable placement. We found a very well run hostel for people with dementia. Each resident had their own bedsit with ensuite and a lovely garden that they could access but the entrance was always securely locked for their safety. A few years later we needed the same facility for my mother who was at risk of wandering.
StarSong
Awkward is my Superpower
- Location
- Los Angeles Suburbs
Our families also came to the realization that our relatives could no longer live alone. Like you, we worried for their safety. A good assisted living or memory care facility can be a godsend for all involved, including the person whose cognitive abilities are slipping.
In GOOD facilities, employees are patient, cheerful, and well rested because they work 8 hour shifts. Caregivers are not also managing laundry, meal prep and cleanup, med dispensing, etc. There's a world of difference between an AL and "residential care" (the latter sounds a lot better than it is). My mother and I learned this the hard way. AL may be more expensive, but it's worth every additional dime. Every. Additional. Dime.
Starsong:
In GOOD facilities, employees are patient, cheerful, and well rested because they work 8 hour shifts.
I've posted this warning before: Be very careful where you place a loved one in a nursing home; if they become aware that no
visitors ever check on Mom/Granny she is placed in room as distant as possible from staff area, she gets little or no attention from staff.
If no one is interested in Granny, the nursing home employees certainly aren't
Again, church affiliated nursing homes are best still: if you visit do not established a pattern of visits as in weekends..
nursing homes do not like visitors that show up unexpected, especially outside visiting hours.
Nursing homes hate unanticipated visitors:
"Oh, I was in area, thought I stop by and see if there are any problems...
This puts nursing home employees in a tizzy1
This is my 2nd post on this topic, certainly not my last
In GOOD facilities, employees are patient, cheerful, and well rested because they work 8 hour shifts.
I've posted this warning before: Be very careful where you place a loved one in a nursing home; if they become aware that no
visitors ever check on Mom/Granny she is placed in room as distant as possible from staff area, she gets little or no attention from staff.
If no one is interested in Granny, the nursing home employees certainly aren't
Again, church affiliated nursing homes are best still: if you visit do not established a pattern of visits as in weekends..
nursing homes do not like visitors that show up unexpected, especially outside visiting hours.
Nursing homes hate unanticipated visitors:
"Oh, I was in area, thought I stop by and see if there are any problems...
This puts nursing home employees in a tizzy1
This is my 2nd post on this topic, certainly not my last
StarSong
Awkward is my Superpower
- Location
- Los Angeles Suburbs
Very true. Frequent visitors also send the subconscious message to staff that the person in their care is someone of value and is deserving to be treated as such.
I don't know that I've been in an actual nursing home in at least 20 years. Hospitals, skilled nursing facilities, residential care, assisted living, and memory care, yes. But actual "nursing homes" (whatever they are), probably not. None of the places my parents or in-laws have been in were anything but welcoming to visitors anytime day or night.
Suzy623
Member
- Location
- Mobile, Alabama
My father had 5 siblings. The oldest was killed in the war. The second died at 82 with a dementia that took only 2 years to turn her into an infant. The next one in line is my father. The fourth one is in the last stages of Alzheimer's and she knows no one, not even her only child or her husband. There are 2 nurses with her so she has assistance around the clock. The next sibling had an inflamed pancreatitis and went from that treatment into Alzheimer's. His wife would not give him his medicines and wouldn't let hospice in to see him. He died about 4 years ago. My daddy's youngest sister died early last year from advanced Alzheimer's.
Daddy elf, which is what I call him because he is no longer the daddy I remember, is generally doing well. He has definitely gotten worse over the last 10 months because my brother died in December and my sister died in August. It was a hard time for all of us and he seems to be more confused after their deaths. I'm the only child living now and he rarely calls me by name. Before he would call me by my sister's name and vice versa but he doesn't even bring up my brother's or sister's name anymore. Lately he has been calling me by my mother's name but, as I did when he called me by my sister's name, I just let it slide and don't bring it to his attention. He goes into the kitchen cabinet sometimes and pulls out things (peanut butter, vegetable oil, coffee creamer, and other odd combinations). Sometimes he leaves them on the counter and sometimes he puts them right back but in different places. Spice jars in the refrigerator, vegetable oil in the laundry room, peanut butter in another cabinet. That's why I started calling him Daddy elf. One night I woke up hearing him walk down the hall and into the kitchen. I got up to see what he was up to. He said he had left some bullets on the table but couldn't find them. A couple of years ago I had taken all the guns and bullets and hid them in separate places in my room. I gave some of the guns to my brother and only kept 2. One gun belonged to my grandfather and the other was a small pistol that I felt comfortable holding and could use. So I was sure he did not have any bullets on the table and didn't have a gun. But it took almost half an hour or longer maybe to distract him from looking for the bullets and get him back to bed. And he still thinks his underwear should be in the medicine cabinet in the bathroom. I'll put them in his drawer, he puts them in the bathroom, and I leave one pair in the medicine cabinet and put the rest back in the drawer.
I talked with the neurologist one day about the chances of me getting Alzheimer's. He told me that if you think you have it then you probably don't. And just because 4 of daddy's siblings had one form or another doesn't mean I'll get it. Made me feel better. Or at least a little better.
Daddy elf, which is what I call him because he is no longer the daddy I remember, is generally doing well. He has definitely gotten worse over the last 10 months because my brother died in December and my sister died in August. It was a hard time for all of us and he seems to be more confused after their deaths. I'm the only child living now and he rarely calls me by name. Before he would call me by my sister's name and vice versa but he doesn't even bring up my brother's or sister's name anymore. Lately he has been calling me by my mother's name but, as I did when he called me by my sister's name, I just let it slide and don't bring it to his attention. He goes into the kitchen cabinet sometimes and pulls out things (peanut butter, vegetable oil, coffee creamer, and other odd combinations). Sometimes he leaves them on the counter and sometimes he puts them right back but in different places. Spice jars in the refrigerator, vegetable oil in the laundry room, peanut butter in another cabinet. That's why I started calling him Daddy elf. One night I woke up hearing him walk down the hall and into the kitchen. I got up to see what he was up to. He said he had left some bullets on the table but couldn't find them. A couple of years ago I had taken all the guns and bullets and hid them in separate places in my room. I gave some of the guns to my brother and only kept 2. One gun belonged to my grandfather and the other was a small pistol that I felt comfortable holding and could use. So I was sure he did not have any bullets on the table and didn't have a gun. But it took almost half an hour or longer maybe to distract him from looking for the bullets and get him back to bed. And he still thinks his underwear should be in the medicine cabinet in the bathroom. I'll put them in his drawer, he puts them in the bathroom, and I leave one pair in the medicine cabinet and put the rest back in the drawer.
I talked with the neurologist one day about the chances of me getting Alzheimer's. He told me that if you think you have it then you probably don't. And just because 4 of daddy's siblings had one form or another doesn't mean I'll get it. Made me feel better. Or at least a little better.
terry123
Well-known Member
- Location
- Houston, Tx.
I got word today that my SIL's mother is being moved to an assisted living facility called The Palace in Miami. 24 hour care was eating up her savings. They will now sell her house and pay for her monthly care from the proceeds. They can get more help there if needed. She is excited to be moving my brother says and gave me her new phone number and address. So I will call her this weekend to see if she remembers me. She loves my brother so much and still remembers him. She usually associates me with him so I am looking forward to talking with her.
StarSong
Awkward is my Superpower
- Location
- Los Angeles Suburbs
Keesha, what category of facility is your mother in now? Both of your parents will be able to stay in a long term nursing home, or will it be something other than that?
I truly feel for you, and admire your character. Not everyone would step up to the plate for people who were less-than-wonderful parents when it was their turn to deliver.
I truly feel for you, and admire your character. Not everyone would step up to the plate for people who were less-than-wonderful parents when it was their turn to deliver.
My mother was in critical care but is now in what’s called ‘alternate level care.’ This means that she needs 24/7 care but is being warehoused at the hospital.
Thank you Starsong.
It’s tough
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One thing I’m grateful for is that there are professionals who look after seniors for a living and thank goodness for that because it truly IS specialized work. Work that I don’t have the ability to do.
Right now in Ontario there are 36,000 seniors waiting for long term care beds. There aren’t enough facilities of care for our elderly.
This isn’t comforting to know.
Right now in Ontario there are 36,000 seniors waiting for long term care beds. There aren’t enough facilities of care for our elderly.
This isn’t comforting to know.
Linda
Senior Member
- Location
- Central California foothills
I felt so sorry for my MIL before she passed. When she was moved out of her bedroom ,at her daughter's ,to a care facility there were notes hidden all over her room. They said "My name is Cowetta *****". She had known for years her memory was getting worse and worse but I guess she always hoped she'd find a note to tell her what her name was. It makes me get tears in my eyes to think about it.