A thief called dementia

[gemgirl]

I was wondering if anyone has a family member who has been diagnosed with dementia. My Aunt had been experiencing somewhat amusing memory problems for the last four or five years. I say amusing, because she often made fun of herself and her flukey memory. When she would ask me the same question three times in ten minutes or tell the same story within the same short time frame, and Uncle would say- Lil, give the kid a break, you just told her that story. My Aunt would reply that it was a good enough story to be told again, and everyone would laugh. Last year, she experienced diabetic shock and coma twice, and that accelerated her condition into serious Alzheimer''s. After sixty two years of marriage to my Uncle, she now lives in a nursing facility where all of her needs are cared for. I realized though that as nice as the place is, they do little to help to slow the process at all and that bothers me.

When I first visited her there, I kissed her the way she and my Uncle kissed me and my sister our whole lives, on the lips (that was always their way), figuring that she would automatically know me because there were only five people she did that with her whole life. Sadly, she didn''t recognize me immediately. My Uncle had to remind her who I was. The first few visits were hard to handle, so I often went when my Uncle was there. I guess I thought he''d deflect my uneasiness with the situation. Then I started going alone. I started going alone and I started talking to her the entire time I was there (usually two to three hours a visit). I was surprised to see after a month, that she was involving herself a little in the conversation. She was really not remembering too much (except for my Grandmother), but once in a while, she remembered just enough to feel happy and satisfied with herself. She was making a teeny tiny bit of progress every week until they changed her meds. Now she''s back into a constantly fatigued foggy state with absolutely no memory at all.

My question is, has anyone found anything that can be done to slow the progress of dementia? Any type of mental exercise? I was thinking of bringing a deck of cards with me and making up a simple game of making pairs. There has to be some way to stimulate her brain. I just don''t know how.

The nice thing is, now she knows exactly who I am every time I see her. (I''ve been visiting weekly since May 21st) I don''t need to say anything to her, she just knows. She tells everybody I''m her niece, and aren''t I beautiful and how much she loves me. When I have to skip a visit she asks me what happened? Where were you? She can''t remember if she ate breakfast or not ten minutes after breakfast, but she''s remembers that I skipped a visit! So I can see that repetition does help. Constancy helps. I dearly want to do whatever I can to make a difference in her life, so any suggestion would be appreciated.

 

[mimzy]

hi gemgirl!

i''m a speech language pathologist and i work in a rehab center and i see quite a few patients that have dementia in some form or another. there definitely are some easy things that you can do to help keep your aunt as sharp as possible - the simple games with cards is a good idea; sorting them into the four suits, making pairs, etc - it also works well with an uno deck keeping track of the date with a calendar is also really beneficial - marking the days when people visit, crossing off the days as they pass, etc. another tool that is useful for people with dementia is what people usually call a ''memory book''; a book of pictures, facts, stories, etc. about the person''s life for them to keep with them. also, if you can ''train'' (for lack of a better word) her to keep a schedule, that would help. can she write still? if so, having her keep track of all the days events in a journal would be good; if not, then having a premade schedule that she can check things off as the day goes on would work also. As for things to do while you are there together, you could probably ask the speech pathologist at the nursing home where she lives if she has any activities that might be appropriate for someone like her. it''s very sweet of you to visit her all the time, so many of those patients never have anyone to come and see them or that cares about them

i hope you come up with something! good luck!

 

[Miscka]

GemGirl, I am so sorry about your Aunt.

I do have family with AD, and I used to be a clinical research coordinator for AD drug trials.

If you do decide to do any exercises, I would be really careful to just watch your Aunt''s reactions. Sometimes AD patients can get agitated if they realize that they cannot do the tasks you ask of them, especially if they realize that it should be easy for them and it isn''t. That is all dependent on the person and their stage. Everyone with AD reacts differently, but don''t push her if she gets uncomfortable. Nothing will bring her memory back, unfortunately, and IMHO it''s not worth upsetting her over.

As far as slowing, I assume she is already on the standard AD drugs. It is such a tragic disease, I really hope that there are strides made soon. I lost my grandfather to it last month, which is actually odd since most AD patients die of another cause.

I also volunteered at an AD-only long-term care facility, and they LOVED being read to or playing Bingo. Even though occasionally a struggle, lol. I really enjoyed it and so did they.

I hope that some of what I said helps, and again, I am so sorry you and your family are dealing with this.

 

[KimberlyH]

My MIL died of complications from Alzheimer''s. Some things that were suggested to us:

Puzzles
Board Games
Watching a movie or TV show and writing down everything she remembered afterwards
A daily calendar (recording daily activities)
Daily discussions about her family/history/memories
We bought a memory game specifically for people w/ Alzheimer''s, I can''t recall the name of it but we read the cards together and followed the directions.

She was on a medication that is supposed to slow down the process, but she hid her disease will and by the time my husband caught on that she was sick she was pretty far gone.

It''s a long and often difficult road. At a certain point, when she was too far gone we simply allowed her to believe whatever it was she was thinking at that moment (e.g. if she swore she cleaned her house that day, even though she didn''t we didn''t argue just told her she did a great job.) but reminded her of other things that mattered when she was confused (e.g. we kept a calendar that we all signed each day we visited and if she thought someone hadn''t come to see her we''d show her the calendar to remind her).

I wish you the best. It is wonderful that you are so willing to help.

 

[bebe]

gemgirl,

My 92 yr. old mother has dementia/Alzheimer''s and lives in a nursing home. She has no clue where she is and as far as we know, she does not recognize family members or her own 4 children. When we first noticed her changing, we insisted she move to an independent living apt. complex. She did not do well there, refusing to go to the dining room for her meals, never interacted with the other residents. I''ve often wondered if the lack of proper nutrition and hydration added to her mental state. She was also on the medication Aricept, but it did nothing for her. We tried everything we could, but she slowly went downhill. She had several falls where she spent the night on the floor because she didn''t know how to get herself up. We had a nurse go in 3 times a day to check on her and make sure she was ok. We should have moved her at that time, but we didn''t for fear of upsetting her further. After 2 yrs. in the apt., we moved her to an assisted living facility, they quickly moved her into the Alzheimer''s wing. She stayed there for 2 yrs. Then she developed pneumonia from aspirating her own food. She spent 8 weeks in a hospital. We just moved her into a nursing home 2 months ago. She''s doing well. The speech therapist at the nursing home feels she cannot improve. They have worked with her for weeks and get nothing other than a few grunts and often a blank stare. We took pictures of the family, my mom''s college yearbook, anything to try and jog her memory. Her Dr. says she is in the advanced stage. She is also on a pureed diet because at times she has forgotten how to swallow. She is combative with the aides during showers and diaper changes (uh!). But overall, she is very quiet and is no trouble to her caretakers. My father also had dementia and eventually passed away from complications he suffered while trying to escape the nursing home he was living in. Very sad. You have received some good advice from the other posters. I can only add, do not give up. Keep her engaged in conversation and take her on walks or short drives. My mom came alive one time when we were driving at night and the lights fascinated her. Anything that stimulates her - ya never know.

 

[gemgirl]

Date: 8/13/2009 5:12:04 PM
Author: mimzy
hi gemgirl!

i''m a speech language pathologist and i work in a rehab center and i see quite a few patients that have dementia in some form or another. there definitely are some easy things that you can do to help keep your aunt as sharp as possible - the simple games with cards is a good idea; sorting them into the four suits, making pairs, etc - it also works well with an uno deck keeping track of the date with a calendar is also really beneficial - marking the days when people visit, crossing off the days as they pass, etc. another tool that is useful for people with dementia is what people usually call a ''memory book''; a book of pictures, facts, stories, etc. about the person''s life for them to keep with them. also, if you can ''train'' (for lack of a better word) her to keep a schedule, that would help. can she write still? if so, having her keep track of all the days events in a journal would be good; if not, then having a premade schedule that she can check things off as the day goes on would work also. As for things to do while you are there together, you could probably ask the speech pathologist at the nursing home where she lives if she has any activities that might be appropriate for someone like her. it''s very sweet of you to visit her all the time, so many of those patients never have anyone to come and see them or that cares about them

i hope you come up with something! good luck!

mimzy, thank you so much for your suggestions. I''m definitely going to bring a nice big wall calendar with me to put in her room and I''ll attach a marker to it so she can X off the dates. We''ve been working on getting her to tell time correctly again, but so far, no luck. She reads her watch left to right with no regard for big hands or little hands. "20 mins to four" comes out 8:20. We have to work on that. Amazingly, she can still read. I found a parish bulletin from a local church on her dresser and I asked her to read me the first paragraph and she could. Not like you or I would read, but she struggled through, sounded out some words and got most of it. She does know her daily schedule. I don''t know how, but she does. It''s sort of subconscious I think, but I guess it goes back to the idea of repetition.

All of the fall and winter holidays are coming soon and I''m going to try to involve her in them in some way. The calendar will come in handy for that, and I''m going to try my best to interest her in the activities at the home, even if I have to go too. They celebrate literally everything there but she hasn''t taken to it yet. I will also speak to her patient advocate and see what advice she can give me as far as stimulating her mind goes. I''m making a list of things to do and bring. Thank you!

I know that a lot of people there never have visitors (and it''s so sad), so I make sure I say hi and chat a little with all of the people at my Aunt''s dining table. I''ve also come to know a few who constantly wander and get lost

and I bring them back to where they''re supposed to be. Although I''m really sick at heart for my Aunt, I sometimes have the chance to break the tension and have a quiet giggle with the wanderers!

 

[DiamanteBlu]

Gemgirl -

I am sorry to hear about what is going on with your aunt. My grandfather died of alzheimer-related complications when he was 82. It was painful to see his decline and his evenutal inability to recognize me [my grandparents lived in Italy and I was there every 3 weeks for some consulting I was doing for a few years]. This was before alzheimer's was even recognized as a disease. My mother swore up and down that he had alzheimer's before anybody had even heard of it.

I know that if you can elevate the level of glutathione in the body it helps the alzheimer's symptoms. If somebody has alzheimer's it has been shown that their brain is under increased oxidative stress. Increasing glutathione reduces that oxidative stress.

So, you might want to try to elevate her glutathione levels through supplementation [show any product to the doctor to make sure that no ingredient is contraindicated]. There are a number of products out there. I take a glutatuine booster and I get it here MaxGXL but I am sure there is other stuff out there too.

Hope this helps!

Dust for your aunt!

 

[gemgirl]

Date: 8/13/2009 6:08:39 PM
Author: Miscka
GemGirl, I am so sorry about your Aunt.

I do have family with AD, and I used to be a clinical research coordinator for AD drug trials.

If you do decide to do any exercises, I would be really careful to just watch your Aunt''s reactions. Sometimes AD patients can get agitated if they realize that they cannot do the tasks you ask of them, especially if they realize that it should be easy for them and it isn''t. That is all dependent on the person and their stage. Everyone with AD reacts differently, but don''t push her if she gets uncomfortable. Nothing will bring her memory back, unfortunately, and IMHO it''s not worth upsetting her over.

As far as slowing, I assume she is already on the standard AD drugs. It is such a tragic disease, I really hope that there are strides made soon. I lost my grandfather to it last month, which is actually odd since most AD patients die of another cause.

I also volunteered at an AD-only long-term care facility, and they LOVED being read to or playing Bingo. Even though occasionally a struggle, lol. I really enjoyed it and so did they.

I hope that some of what I said helps, and again, I am so sorry you and your family are dealing with this.

Thank you Miscka. Yes, she''s on the standard regime of drugs for dementia, Aricept and something new too. They also had her on a high dose of Xanax and that was making her feel sick, so now they''re switching her to Risperdal. I always see the drug coordinator, so I''ll ask her more questions when I go tomorrow. I didn''t want to step on my Uncle''s toes by asking too many questions. When I saw my own neurologist last month, I asked her about the effectiveness of Aricept and she said it really doesn''t do much but they give it because it''s all they really have right now. That didn''t help me to feel any better.

My Aunt doesn''t voluntarily obey them at the home when they ask her to do something like have her physical therapy. She gives them an argument in fact, but luckily she''s really a lamb at heart, so I couldn''t imagine her getting arrogant (thank God). If I''m there, I don''t take no for an answer, I make her do her PT and she''ll do it as long as I hold her hand through the whole thing.

Actually, the only people who are dealing with this on a constant basis are my Uncle and me. Their two kids live far away (one five hours away and one clear across the country) and see her as often as they can, but that''s not very often at all. One of my cousins sees her every few months, but my Aunt never remembers seeing anyone but my Uncle and me. I do feel very sad that she''s going through this, but I am really happy that she''s only about twenty minutes away from me and I can go any time I want to.

I''m very sorry about your Grandfather''s passing. It''s so incredible that doctors don''t know more than they do about this disease.

 

[gemgirl]

Date: 8/13/2009 6:23:30 PM
Author: KimberlyH
My MIL died of complications from Alzheimer''s. Some things that were suggested to us:

Puzzles
Board Games
Watching a movie or TV show and writing down everything she remembered afterwards
A daily calendar (recording daily activities)
Daily discussions about her family/history/memories
We bought a memory game specifically for people w/ Alzheimer''s, I can''t recall the name of it but we read the cards together and followed the directions.

She was on a medication that is supposed to slow down the process, but she hid her disease will and by the time my husband caught on that she was sick she was pretty far gone.

It''s a long and often difficult road. At a certain point, when she was too far gone we simply allowed her to believe whatever it was she was thinking at that moment (e.g. if she swore she cleaned her house that day, even though she didn''t we didn''t argue just told her she did a great job.) but reminded her of other things that mattered when she was confused (e.g. we kept a calendar that we all signed each day we visited and if she thought someone hadn''t come to see her we''d show her the calendar to remind her).

I wish you the best. It is wonderful that you are so willing to help.

Thank you for the suggestions Kimberly. I''m so sorry about your mother-in-law.

I wish I could get my Aunt to watch TV. She used to love it, but now she''s not interested in it. I''m going to use everyone''s suggestions and see if it makes a difference.

I''m already getting used to some of the other residents at my Aunt''s facility who are worse off than she is, as far as believing what they want to. Some chatter on incessantly about not being able to visit for long because they have to run home to make dinner for their husbands

. Hopefully my Aunt won''t be in that bad a shape for another couple of years but they never know how this is going to go.

 

[Amethyste]

Gemgirl...

I am really sorry about your aunt... but I am happy to see that you visit her and care for her as much as possible...
My daddy started his Alzheimers at 54 and he died at 67. It was a long battle... but i think that his quality of life
was excellent cause our family went to see him often and his GF stood by his side every single day, she read to him, cared for him...
She was truly a devoted and loving person. Repetition the key and also doing things outside of normal surroundings is great too...
She took him to the aquarium, the movies... Played boardgames with him... Eventually, the disease took its normal course, but she
truly added quality to his life... Justl ike you are doing

i admire people like yourself...

 

[Miscka]

Gemgirl, you may ask about Namenda if she is not on that as well. Just a thought.

It really is a thief. My Grandfather was a great man, and the AD made him a very different person. Fortunately, I remember him the way that he was, as he had a fierce independent streak and would have hated for anyone to see him weak.

Keep us updated on your Aunt, she is lucky to have a such a loving niece for sure. Some people have a really hard time dealing with their loved one in these situations, and therefore just don''t, so kudos to you for being there.

 

[gemgirl]

Date: 8/13/2009 6:45:34 PM
Author: bebe
gemgirl,

My 92 yr. old mother has dementia/Alzheimer''s and lives in a nursing home. She has no clue where she is and as far as we know, she does not recognize family members or her own 4 children. When we first noticed her changing, we insisted she move to an independent living apt. complex. She did not do well there, refusing to go to the dining room for her meals, never interacted with the other residents. I''ve often wondered if the lack of proper nutrition and hydration added to her mental state. She was also on the medication Aricept, but it did nothing for her. We tried everything we could, but she slowly went downhill. She had several falls where she spent the night on the floor because she didn''t know how to get herself up. We had a nurse go in 3 times a day to check on her and make sure she was ok. We should have moved her at that time, but we didn''t for fear of upsetting her further. After 2 yrs. in the apt., we moved her to an assisted living facility, they quickly moved her into the Alzheimer''s wing. She stayed there for 2 yrs. Then she developed pneumonia from aspirating her own food. She spent 8 weeks in a hospital. We just moved her into a nursing home 2 months ago. She''s doing well. The speech therapist at the nursing home feels she cannot improve. They have worked with her for weeks and get nothing other than a few grunts and often a blank stare. We took pictures of the family, my mom''s college yearbook, anything to try and jog her memory. Her Dr. says she is in the advanced stage. She is also on a pureed diet because at times she has forgotten how to swallow. She is combative with the aides during showers and diaper changes (uh!). But overall, she is very quiet and is no trouble to her caretakers. My father also had dementia and eventually passed away from complications he suffered while trying to escape the nursing home he was living in. Very sad. You have received some good advice from the other posters. I can only add, do not give up. Keep her engaged in conversation and take her on walks or short drives. My mom came alive one time when we were driving at night and the lights fascinated her. Anything that stimulates her - ya never know.

Wow bebe, your Mom''s 92! I do have some friends who have been caring for the wife''s Mom (w/Alz) at home
for the last fourteen years. She will turn 96 in just a couple of weeks. It''s amazing how different people''s cases can be. After fourteen years though, my friend''s Mom is also in a state of not being in contact with anyone or anything around her. I wish I had my friends here full time to ask questions of because they''re a wealth of info, but they''ve learned how to pack up her Mom and take her to their summer home with them. So I don''t see them for eight months of the year.

My Uncle placed my Aunt in the home because he couldn''t care for her alone anymore (she really does need 24/7 care now) and because she was falling a lot and he was afraid of her getting hurt. In my Aunt''s case, she''s kind of at stage 6 of 7 with her cognitive troubles, but the neurological aspect of her Alz. is advancing more quickly. She can''t walk any longer, she can''t stand up straight and she can barely bend her legs. She also can''t use her hands much. They''re becoming stuck in a half clenched position. Believe it or not, I think her neuro problems get to me more than her cognitive problems do although it''s a toss up.

I am awfully sorry about your Dad. That''s so sad. I''m so sorry....

The one thing that totally engages my Aunt, even if just for two or three minutes at a time? My jewelry! So I try to wear something different every time I visit. She likes jewelry in general, but the sparkle of my diamonds totally engages her every time. The nice thing about times like that is that my Aunt''s normal personality still shines through. She asked me who bought me my seven stone ring, and I said "my husband". Her response, "he''d better!" with the Italian hand in the air like she''d give him a slap if he wasn''t good to me. LOL! That was my Aunt when she was well, and it makes me happy to see that she''s still in there somewhere. All of my diamond earrings? "Where''d you get those?" and I tell her Fortunoff. Then it''s always "I remember Fortunoff!" for about two minutes, then she returns to blank again.... but I keep trying. I''m enjoying spending time with her, as weird as that sounds. My Aunt & Uncle were very kind and loving to me and my sister when we were growing up and I''d like to return the love they gave me.

 

[gemgirl]

Date: 8/13/2009 7:03:22 PM
Author: DiamanteBlu
Gemgirl -

I am sorry to hear about what is going on with your aunt. My grandfather died of alzheimer-related complications when he was 82. It was painful to see his decline and his evenutal inability to recognize me [my grandparents lived in Italy and I was there every 3 weeks for some consulting I was doing for a few years]. This was before alzheimer''s was even recognized as a disease. My mother swore up and down that he had alzheimer''s before anybody had even heard of it.

I know that if you can elevate the level of glutathione in the body it helps the alzheimer''s symptoms. If somebody has alzheimer''s it has been shown that their brain is under increased oxidative stress. Increasing glutathione reduces that oxidative stress.

So, you might want to try to elevate her glutathione levels through supplementation [show any product to the doctor to make sure that no ingredient is contraindicated]. There are a number of products out there. I take a glutatuine booster and I get it here MaxGXL but I am sure there is other stuff out there too.

Hope this helps!

Dust for your aunt!

DiaBlu, thanks! I''ve never heard of glutathione, but I''m going to look up that supplement and bring the information with me. I know the meds coordinator Debbie. I see her most times I''m there. I''ll ask about it.

I''m sorry about your Grand Dad. I never realized that so many people suffered from this. It''s becoming so unbelievably common, it''s scary.

 

[gemgirl]

Date: 8/14/2009 9:52:33 AM
Author: Amethyste
Gemgirl...

I am really sorry about your aunt... but I am happy to see that you visit her and care for her as much as possible...
My daddy started his Alzheimers at 54 and he died at 67. It was a long battle... but i think that his quality of life
was excellent cause our family went to see him often and his GF stood by his side every single day, she read to him, cared for him...
She was truly a devoted and loving person. Repetition the key and also doing things outside of normal surroundings is great too...
She took him to the aquarium, the movies... Played boardgames with him... Eventually, the disease took its normal course, but she
truly added quality to his life... Justl ike you are doing

i admire people like yourself...

Amethyste, I am so sorry about your Dad, and the onset at such a young age! Gosh, so many families have been affected by this horrible disease. Your Dad was lucky to have a loving family and a caring lady friend to keep him company throughout his journey.

Yes, repetition is key. I found that out early on. My Aunt doesn''t remember that she has two daughters unless they''re standing in front of her but she remembers me because I''m there every week.

I can''t get her to go out, not that I would take her out alone. That would be too dangerous. But she used to LOVE eating out at diner''s. It''s a New York thing I think

. I asked her if she would like to go to a diner for lunch with my Uncle and me one day and she said no. She never wants to leave the home. She says she feels safe there. My Uncle doesn''t even take her to their family doctor anymore. Everything is done through the home now.

I hope I am making a small difference in her life. I do know that as soon as she spots me walking in, she lights up and comes right out of her daze. That makes me very happy.

Thank you for being so sweet Amethyste. You''re always so sweet, kind and caring in all of your posts.

 

[gemgirl]

Date: 8/14/2009 9:53:03 AM
Author: Miscka
Gemgirl, you may ask about Namenda if she is not on that as well. Just a thought.

It really is a thief. My Grandfather was a great man, and the AD made him a very different person. Fortunately, I remember him the way that he was, as he had a fierce independent streak and would have hated for anyone to see him weak.

Keep us updated on your Aunt, she is lucky to have a such a loving niece for sure. Some people have a really hard time dealing with their loved one in these situations, and therefore just don''t, so kudos to you for being there.

I am going to speak with the meds lady today to get a list if I can, of all the meds my Aunt is on. I''m in a difficult spot here though when it comes to suggesting new meds and supplements. Half of it is not wanting to step on my Uncle''s toes, and the other half is the insufficient coverage that Medicare has for chronically ill people. My Aunt quickly maxxed out her drug coverage just three months into the year and my Uncle has been left to pay out of pocket for everything until they get through the donut hole. Then there''s also the drugs that Medicare doesn''t cover at all. It''s really awful.

I smile when I think of how my Aunt was. She was no church mouse for sure! She was like my Mom and their Mom, an Italian lady with guts and an opinion about everything! Now she''s a little quiet lamb. Quite a change.

We don''t have a big family. My Aunt & Uncle have two daughters, but they both live far away. My Mom and my sister have disowned me (a whole other story). My Mom is housebound because of illness (and a mild case of early dementia) and my sister never liked being around sick people. They''ve never visited my Aunt. It''s just me and my Uncle of course. To be completely honest with you, the first time I saw her, I was shocked. Totally blown out of my shoes, shocked. Gone was at least 75 lbs., gone was all the color in her hair and all of the sparkle and life in her face. In their place, was a blank slate. The little voice inside my head just kept saying- don''t register shock, don''t have a funny look on your face, and for God sakes- don''t cry! The first week was extremely hard. I sobbed on the drive home both times. But I didn''t cut myself any slack and I swore to myself that I wouldn''t chicken out, and I haven''t. Now I enjoy my time with her. I look forward to it. Some visits are hard, but when she passes, I''ll know that I did everything I could for her.

 

[Amethyste]

Date: 8/14/2009 10:21:26 AM
Author: gemgirl

Date: 8/14/2009 9:52:33 AM
Author: Amethyste
Gemgirl...

I am really sorry about your aunt... but I am happy to see that you visit her and care for her as much as possible...
My daddy started his Alzheimers at 54 and he died at 67. It was a long battle... but i think that his quality of life
was excellent cause our family went to see him often and his GF stood by his side every single day, she read to him, cared for him...
She was truly a devoted and loving person. Repetition the key and also doing things outside of normal surroundings is great too...
She took him to the aquarium, the movies... Played boardgames with him... Eventually, the disease took its normal course, but she
truly added quality to his life... Justl ike you are doing

i admire people like yourself...

Amethyste, I am so sorry about your Dad, and the onset at such a young age! Gosh, so many families have been affected by this horrible disease. Your Dad was lucky to have a loving family and a caring lady friend to keep him company throughout his journey.

Yes, repetition is key. I found that out early on. My Aunt doesn''t remember that she has two daughters unless they''re standing in front of her but she remembers me because I''m there every week.

I can''t get her to go out, not that I would take her out alone. That would be too dangerous. But she used to LOVE eating out at diner''s. It''s a New York thing I think

. I asked her if she would like to go to a diner for lunch with my Uncle and me one day and she said no. She never wants to leave the home. She says she feels safe there. My Uncle doesn''t even take her to their family doctor anymore. Everything is done through the home now.

I hope I am making a small difference in her life. I do know that as soon as she spots me walking in, she lights up and comes right out of her daze. That makes me very happy.

Thank you for being so sweet Amethyste. You''re always so sweet, kind and caring in all of your posts.

*blush* Thank you for your sweet words, Gemgirl. i think that AD manifests itself in so many different ways for each individual. In a sense, I understand why your Aunt doesn''t want to venture out, one of the first thing that AD patient looses ( after memory loss ) is a sense of security. When they go in and out of their phases, they want to know they are still at the same place as they were, if you know what i mean, safe surroundings. If too many things changes, they get really insecure and can break down... I remember, one year, we took my dad to his favorite buffet place for his birthday... He was pretty far along in his disease, and he had many phases of in and outs at the restaurant... the last one, when he "came back", he started to cry cause he didnt know where he was... It was truly heart wrenching to see my dad in a ball, like a child scared of the world when I know how he was before... i think it is so nice of you to go and care for her, they need a lot of love and touch... My dad loved to have hir hair rubbed, so when someone would do it for him, he would just smile, close his eyes and be happy. Like he remembered how our touch was feeling on him... It''s hard to explain.

You have made a tremendous difference in her life by going to see her on a weekly basis. I bet you are full of vibrant love and genuine care as a person. Just like Sunflowers... Which brings me to this next suggestion: bring them flowers... Stimulate the senses with they fabulous colors and delightful smells...

Much love to you -

 

[Paz]

First of all, **HUGS***

Dementia truly is the worst thief there is! My mother has Pick''s Disease, which is similar to AD, but it hits earlier, faster, and destroys language and personality first. My mom is 62 and was diagnosed three years ago and has progressed so quickly that the doctor''s tell us we''ll be lucky if she survives until Christmas. Her speech is garbled, she has no idea what appropriate behavior is (she tries to pee in parking lots), and her moods swing from one extreme to another. Unfortunately, there are no medications for her type of dementia; there is no known cause or treatment because it is so rare.

My heart goes out to your family and to your aunt for being struck by AD. It sounds like you are a wonderful support for her and your uncle and a true advocate for her! Keep on what you''re doing and make sure that you have a support system in place for yourself because you will need it. On the days it''s too hard, take a break and do something for YOU. We have found that my mom does better when we take care of ourselves. Also, when discussing her care in front of her please make sure that the staff know to include her. Even though my mom doesn''t always understand what people are saying, she KNOWS when she''s being talked about and gets very upset if she''s not included. Other than that, I don''t have any more advice. Just keep loving your aunt and make sure that you and your uncle are taking care of yourselves.

My thoughts and prayers are with you and your family.

 

[Cehrabehra]

deleted

 

[bebe]

Date: 8/14/2009 10:03:21 AM
Author: gemgirl

Date: 8/13/2009 6:45:34 PM
Author: bebe
gemgirl,

My 92 yr. old mother has dementia/Alzheimer''s and lives in a nursing home. She has no clue where she is and as far as we know, she does not recognize family members or her own 4 children. When we first noticed her changing, we insisted she move to an independent living apt. complex. She did not do well there, refusing to go to the dining room for her meals, never interacted with the other residents. I''ve often wondered if the lack of proper nutrition and hydration added to her mental state. She was also on the medication Aricept, but it did nothing for her. We tried everything we could, but she slowly went downhill. She had several falls where she spent the night on the floor because she didn''t know how to get herself up. We had a nurse go in 3 times a day to check on her and make sure she was ok. We should have moved her at that time, but we didn''t for fear of upsetting her further. After 2 yrs. in the apt., we moved her to an assisted living facility, they quickly moved her into the Alzheimer''s wing. She stayed there for 2 yrs. Then she developed pneumonia from aspirating her own food. She spent 8 weeks in a hospital. We just moved her into a nursing home 2 months ago. She''s doing well. The speech therapist at the nursing home feels she cannot improve. They have worked with her for weeks and get nothing other than a few grunts and often a blank stare. We took pictures of the family, my mom''s college yearbook, anything to try and jog her memory. Her Dr. says she is in the advanced stage. She is also on a pureed diet because at times she has forgotten how to swallow. She is combative with the aides during showers and diaper changes (uh!). But overall, she is very quiet and is no trouble to her caretakers. My father also had dementia and eventually passed away from complications he suffered while trying to escape the nursing home he was living in. Very sad. You have received some good advice from the other posters. I can only add, do not give up. Keep her engaged in conversation and take her on walks or short drives. My mom came alive one time when we were driving at night and the lights fascinated her. Anything that stimulates her - ya never know.

Wow bebe, your Mom''s 92! I do have some friends who have been caring for the wife''s Mom (w/Alz) at home
for the last fourteen years. She will turn 96 in just a couple of weeks. It''s amazing how different people''s cases can be. After fourteen years though, my friend''s Mom is also in a state of not being in contact with anyone or anything around her. I wish I had my friends here full time to ask questions of because they''re a wealth of info, but they''ve learned how to pack up her Mom and take her to their summer home with them. So I don''t see them for eight months of the year.

My Uncle placed my Aunt in the home because he couldn''t care for her alone anymore (she really does need 24/7 care now) and because she was falling a lot and he was afraid of her getting hurt. In my Aunt''s case, she''s kind of at stage 6 of 7 with her cognitive troubles, but the neurological aspect of her Alz. is advancing more quickly. She can''t walk any longer, she can''t stand up straight and she can barely bend her legs. She also can''t use her hands much. They''re becoming stuck in a half clenched position. Believe it or not, I think her neuro problems get to me more than her cognitive problems do although it''s a toss up.

I am awfully sorry about your Dad. That''s so sad. I''m so sorry....

The one thing that totally engages my Aunt, even if just for two or three minutes at a time? My jewelry! So I try to wear something different every time I visit. She likes jewelry in general, but the sparkle of my diamonds totally engages her every time. The nice thing about times like that is that my Aunt''s normal personality still shines through. She asked me who bought me my seven stone ring, and I said ''my husband''. Her response, ''he''d better!'' with the Italian hand in the air like she''d give him a slap if he wasn''t good to me. LOL! That was my Aunt when she was well, and it makes me happy to see that she''s still in there somewhere. All of my diamond earrings? ''Where''d you get those?'' and I tell her Fortunoff. Then it''s always ''I remember Fortunoff!'' for about two minutes, then she returns to blank again.... but I keep trying. I''m enjoying spending time with her, as weird as that sounds. My Aunt & Uncle were very kind and loving to me and my sister when we were growing up and I''d like to return the love they gave me.

I just returned from visiting my mom. And during that visit, her eyes followed my ER. She even pointed at it several times. It''s odd, because she never had a love of jewelry like I do and I don''t think she ever knew how crazy I was about bling. So, gemgirl when I read your Aunt noticed your jewlery, I thought - oh my gosh, mom did too.

Your Aunt is very lucky to have you. I wish I could see my mom more, but she''s quite a distance from me now. Regarding stimulating things, can you brush your Aunt''s hair? My mom enjoys that and often I''ll put a mirror in her hand and position it so she can see. Vanity was one of the last things that left my mom, so I know looking nice was always a priority for her. Maybe by brushing her hair, something is connecting with her, dunno. But she seems to enjoy it.

 

[rainwood]

My mother is 86 and was diagnosed with Alzheimer''s almost 5 years ago. The disease has taken all of her short-term memory and is now snatching much of her long-term memory. I try to keep in mind that she lives in the moment so I don''t ask questions she wouldn''t be able to answer and I don''t try to get her to remember things she can''t. If she asks the same question over and over, I try to answer it each time as if it''s the first. She''s lost the initiative to do things she once loved, liked cooking and gardening and reading, but she does play solitaire almost incessantly, and she''s still able to do that fairly well. I''ve also started playing a card game with her where we each get half the deck and just flip the top card, high card wins that round. She likes it because it''s simple, it goes quickly, and she doesn''t have to remember what came before.

Mostly, I try to make sure she feels comfortable participating in things to the level she can. She can''t cook anymore, but she can still do individual tasks in the kitchen if you tell her and then are there to help if needed. But it''s no use trying to restore functions that are lost because they are truly lost. It''s tragic but at the same time there can be a delight in simple things and you just have to figure out what those are for your aunt.

 

[jewelerman]

sorry to hear about your aunt.My mother was diagnosed with early on set Alzheimers at age 57.She died 4 years ago after a brave battle with this thief and brest cancer.If any one in your family has problems with dementia think about taking the following precautions...
1-dont leave them alone without supervision...mom almost burnt the house down after turning on all the burners at once and leaving the house..
2-take controll of all money,bank accounts and sale or gifts to friends...these people lose understanding of the value of money and possessions like art and jewelry....my mother gave away or threw away all of her diamond jewelry,china and dress clothes before the family knew what happened. Dis-honest people will take advantage if they can!
3-take away drivers license!
so sorry to be a downer,but i think this is vary needed info in our discussion!JM