Dementia...

[Swampfox762]

I tend to be a straight forward son of a bitch.  Ask me a question, I'll answer you with the "Truth" the best I can and know.

My 89 year old aunt, I just had to put into Assisted Living, 6 months ago... a truly remarkable place, 

I'm having trouble dealing with her dementia, cause I can't actually speak the Truth to her.  Dementia is so incredibly miserable. 

There one minute and happy.... Then..."Why can't I go home" the next.  Breaks my heart.  God bless my wife...she takes over...

The "Key"...Everyone says is to "Divert" from the question.  "Well, the Dr.'s say you need to have special care...

SO...did you go walking today???" 

It's just so sad.  Sorry for the rant. 

It's just heart breaking, being the type of person I am...and still think I can talk, and explain things to her so she will understand.  No.

Any of Ya'll have any experiences with this?

[Swampfox762]

Not a real "Conversational" topic is it...

[railfancwb]

Lost my mother to it. Not pleasant at all. Especially when she didn’t recognize me. 

[holyjohnson]

i grew up with my Great Grandfather, he was the nicest Kindest most Generous Person you could ever meet.

he started with Dementia and Alzheimer's skipped in an took a brutal toll.

it was Heartbreaking to see him not able to understand what was happening to him, or why.

i was the only one he remembered right to the end and it was all i could do to keep myself from actually breaking him out of the Home and making a run for it like he was asking.

sad to know but, let the forgetfulness help, remember it will pass and help them think of something positive and better.

give them something new to focus on and help ease through the fear at the moment.

Demetria sucks and is Heartbreaking to watch,

i also grew up with my Great Aunt, his Daughter and she went through the same thing and i was the only one she remembered too, was a surreal Heartbreak.

Good Luck and God Bless, its a hard road to go Down.

[crockett]

No experiences here, and it pisses me off when people divert from the questions I asked. Maybe this works with folks that are dealing with dementia.

The moment I get diagnosed with that or anything comparable and I will cut a huge corner. Wouldn't want anybody having to deal with my misery and I for sure won't watch my own degeneration.

The only suggestion I have in your case, is to tackle it one day at a time, much like a monotone work routine. You will not help her by screwing up your own life.

[NPTim]

Check out videos by Teepa Snow. She is excellent and a subject matter expert.

[Batesmotel]

I don’t know what was worse, seeing one great aunts mind go before she died. Not knowing anything or anyone. Or seeing another keep her mind sharp for years as her body fell apart. Both suck. 

[Peng]

Yes, I had a long miserable 9 years of it with Dad.

After Mom passed from cancer (we thought that was hard, boy were we in for a surprise) he went downhill fast.

My engineer brain made it very difficult for years.  Eventually I accepted the fact that nothing would make sense, and the things that made sense to me would not to him because his brain was simply working differently than normal.

Yes there will be periods of anger, even violence and calm and you never know what you're going to get day to day.  The advanced stages of the disease seemed easier because there was no recognition of his decline any longer.  The last year or so he did not know me, but he seemed OK with a stranger bringing him food and spending holidays with him so it could have been worse.

I found a good strategy was just to go with the flow, and say or do whatever he needed to calm him.  I made lots of fake phone calls to the police because he was convinced there were people in trouble at his old job site, called his banks, told him Mom was out shopping and his car was in the shop for awhile.   

If I could get him down for even a 5 minute nap, his memory reset and whatever just happened was simply gone.  Cold comfort, but you take what you can get.

Best of luck with this.  

[VinD]

You are not alone! Went through this with my Mom. Dad for a long time was primary care giver until he couldn't, me and my siblings took over. We alternated days and evenings for about 5 years. Dad just couldn't stop caring for her and ended up having a heart attack that killed him. By the way this is a very common problem for caregivers, they concentrate so much effort on caring for their patient to their detriment that they will die before the patient does. We kept her home for about a year and a half before we had to make a decision to place her in a special care nursing home. It broke all of our hearts, but was the right thing to do and the director made us realized that it was the right decision by telling us "Let us be the caretaker of your mother so you can become her children again". There was never a day that passed where one of more of us were at her nursing home. Hard part was when she had no idea of who we were, but we knew who she was, our mother, and the rest didn't matter. This will be 4 years this Christmas, Damn dust!

[Mrs.Cicero]

I'm glad that you are willing to deal with it.  My husband's grandmother blew thru an entire $2M nest egg (she was a sharp investor when she was young)  - handing it out to frauds and scum (basically any stranger who called her on her phone) because none of her 5 children were willing to deal with convincing her to agree to a two signature requirement for her to write checks (one of her sons lived with her, and a daughter lived 5 miles away so it's not like someone wouldn't be available) or to have her declared incompetent (which she obviously was).  She finally ended up in a home (on the gov't's dime) after leaving the burners on the stove on one too many times for it to be ignored.  She didn't recognize anyone by the end.  Senility/Alzheimers is what convinced me that suicide is an acceptable option under certain conditions.  I hate it.

[Swampfox762]

20 minutes ago, Mrs.Cicero said:

I'm glad that you are willing to deal with it.  My husband's grandmother blew thru an entire $2M nest egg (she was a sharp investor when she was young)  - handing it out to frauds and scum (basically any stranger who called her on her phone) because none of her 5 children were willing to deal with convincing her to agree to a two signature requirement for her to write checks (one of her sons lived with her, and a daughter lived 5 miles away so it's not like someone wouldn't be available) or to have her declared incompetent (which she obviously was).  She finally ended up in a home (on the gov't's dime) after leaving the burners on the stove on one too many times for it to be ignored.  She didn't recognize anyone by the end.  Senility/Alzheimers is what convinced me that suicide is an acceptable option under certain conditions.  I hate it.

Thank God I don't have that problem.  2 years ago she realized she needed help and asked me if I (We) would help her as she was "forgetting things"  (Like the Stove Burners) 

We went to an "Elder Law" office and she put me, my wife and my daughter as POA in descending order.  I got a call from one of the Church elders one day and he told me, "You really need to take her Car keys. " I went to church this morning and she was asleep in her car."  She had been there since 3am, for the 7 am Mass.  THAT was something thank God I didn't have to do.  I'm afraid it wouldn't have worked any way...

About 6 months ago the day after  her best friend of 70 years convinced her she should get the jab, she got out of bed in the night, passed out and hit her head when she fell.  She also REALLY messed up her back.  The Friend found her the next morning and called me.  Had to call the ambulance cause she was in so much pain... 

3 weeks in the hospital.  And it's been all downhill from there.  We transferred her to a rehab home right down the street from us.  2 months in there with covid Lockdown...(we couldn't even see her, just phone calls)... before we could move her to the ALF. 

She's been there 6 months now.  They had to put a bracelet on her because she kept trying to get out the door.  She can barely get out of her chair in her apt., but when she does she tries to "wander" most of the day.  Thank God the people there are just Angles.  

Anyway, thanks for the kind words, and I will most certainly give that Lady a listen to Tim.  Most appreciated folks.

[tadbart]

It's terribly cruel when the body outlives the mind. Or when the mind outlives the body.  Getting old (especially as old as your aunt) is a terrible thing. Even the Bible says that a man's years will be 70, or 80 if he's mighty. Almost 90 is remarkable.

I think we've done great things in medicine, but I also think that those great things have had unintended consequences with longevity.  

Lost 2 grandparents to dementia. Very hard on the whole family.  I'm sorry you guys are dealing with this.

[deputy tom]

I had to deal with my mother's dementia. It was a rough several years. At the end she went quickly with an aneurysm. I hope I go the same way. tom.

[Swampfox762]

5 hours ago, deputy tom said:

I had to deal with my mother's dementia. It was a rough several years. At the end she went quickly with an aneurysm. I hope I go the same way. tom.

You and me both sir...you and me both...

[Huaco Kid]

7 hours ago, deputy tom said:

I had to deal with my mother's dementia. It was a rough several years. At the end she went quickly with an aneurysm. I hope I go the same way. tom.

Dad said that Mom cooked breakfast,  fed the cows, horses, chickens, pigs, dogs, and was sewing at the living room table, when she said she had a headache and was going to take a nap.  Never woke up.

The doctors kept her alive for several days,  but said there was no chance.  Totally unresponsive.  As a family, we decided to pull the plug.

But....  for those days,  every time we went into her room,  her heart rate and breathing would suddenly go up.

That's a realization I'll never forget,  and has forever changed my life.

[Huaco Kid]

My family has a long history of being, reasonably, healthy, when we suddenly drop dead.

I hope I die before I get old.

[deputy tom]

3 minutes ago, Huaco Kid said:

My family has a long history of being, reasonably, healthy, when we suddenly drop dead.

I hope I die before I get old.

Amen. tom.

[pipedreams]

1 hour ago, Huaco Kid said:

My family has a long history of being, reasonably, healthy, when we suddenly drop dead.

I hope I die before I get old.

There is nothing wrong with being old as long as your healthy.  There are some amazing seniors out there but your right, it's time to check out when you become a burden to yourself and everyone else.

[janice6]

22 hours ago, Swampfox762 said:

I tend to be a straight forward son of a bitch.  Ask me a question, I'll answer you with the "Truth" the best I can and know.

My 89 year old aunt, I just had to put into Assisted Living, 6 months ago... a truly remarkable place, 

I'm having trouble dealing with her dementia, cause I can't actually speak the Truth to her.  Dementia is so incredibly miserable. 

There one minute and happy.... Then..."Why can't I go home" the next.  Breaks my heart.  God bless my wife...she takes over...

The "Key"...Everyone says is to "Divert" from the question.  "Well, the Dr.'s say you need to have special care...

SO...did you go walking today???" 

It's just so sad.  Sorry for the rant. 

It's just heart breaking, being the type of person I am...and still think I can talk, and explain things to her so she will understand.  No.

Any of Ya'll have any experiences with this?

No.  But the thought of it happening to my wife scares the crap out of me.  Our whole lives have been together since we were 16 and now she is forgetting little things while my memory is getting better and better.

I tell her that my greatest fear is that she will forget me...........  I don't know how to deal with the possibility........  Sorry for your Aunt.. 

[Huaco Kid]

15 minutes ago, pipedreams said:

There is nothing wrong with being old as long as your healthy.

My wife's great-aunt Martha,  ~100,  was 100% all there.  Got around just fine, with a walker.

She started hand-writing her Christmas cards on January 1st.  The most beautiful writing, evar.  She had to start early because she had hundreds of friends and family.

We've got a handwritten note, scrawled on some wax paper,  given to my wife on our wedding day.  It's a family recipe, that turns into some life-advice.

Something like, ".... and although this meal will always suffice, please take an older wife's advice,  and add much love, and a lot of spice!"

[Historian]

22 hours ago, Swampfox762 said:

IAny of Ya'll have any experiences with this?

Yes, I have had to deal with it.  It requires great deal of love and compassion but it's draining on yourself.  

I will always remember standing in the hardware store with a guy who was talking to his mother...who couldn't remember she had a wonderful life.   I waited until the painful phone call was over and walked up the man and told him he wasn't alone.

Also dealt with it my line of work.  

It's cruel.

[Rellik]

Currently.going through this with my mom.  Frustrating to keep telling her how to work the TV, thermostat, and being asked the same question, over and over.  

I subscribed to the Dementia Careblazers chn. It has a lot of hints for the sanity and support of the care giver.  Things to never do with the patient, and things to be forwarded about.  

Pray a lot.  And acknowledge its not her fault.  Some things get easier.  Other things build up, and you want to yell at them for not paying attention.  Like a 4 yo.  

Best wishes.  

[inthefrey]

Been watching the posts roll in on this. 

From my own experience.

Mom was fully "there" till about 87, She took care of my adult, handicapped sister till that age at which time my sister was placed in a group home provided by United Cerebral Palsy. With my sister being cared for, Mom was living alone in her condo she had mortgaged to the last penny. She began taking prescription OxyContin for back pain and , of course, became addicted to it. Before she got too bad she told me, "If I ever get so bad that I can't respond to you or recognize you, Please let me go..." I agreed. She had her will drawn up and I was made executor.

One Friday afternoon, I received a call from the emergency room in Annapolis, Maryland,  5 hours away (300 miles away) that mom had been taken by ambulance and was in very serious condition. She had basically burned a hole in her stomach from the pain medicine. She was admitted to the hospital. I was able to speak to the attending Dr. who told me, "...Your mom is very sick and has a perforated stomach..." I asked, "Okay, what are we going to do?.." He said, "Well, there's not much we can do because we feel she would not make it through surgery...We usually just sedate and wait for them to pass..." (I launched on him...) "Look.."I said," You're going to operate on my mother and fix her stomach! I will sign any waiver. She is a strong woman and she will easily survive the surgery.." (Flash forward 5 hours____) I arrive at the hospital as Mom is coming out of the anesthesia... She made it just fine.

This is where my journey through her Dementia began.

The next day I printed out legal documents granting me Financial and Medical POA (Power of Attorney) . I took them to the hospital where she signed them and they were notarized. THIS SINGLE LEGAL ACT saved us from enormous trouble later on.  My wife and I talked at great length about what we should do. We decided to basically kidnap her, yes kidnap her and bring her up to Pennsylvania. I was all based on telling her that we wanted her to spend some time with us and she could stay close at a local "Hotel" . There was a highly-rated assisted care facility a couple miles away and it would be perfect. Mom had an annuity from my dad that would pay for her stay no matter how long. 

So, we set a date and I went to get her. I took all her favorite clothes and her personal items. She spent the first night with us and then we went to the "Hotel". Once mom was here with us a few weeks, we had an estate sale and sold all of the non-personal items in her condo and left it vacant. The Power Of Attorney.  If you care for someone that has cared for you, this IS an emotional rollercoaster. There is very little you can do except be there for them. Visit with them constantly, talk to them, show them pictures, talk about anything they want to talk about.
 

To make this story much shorter, In 5 short years, I watcher her go from a fully cognizant woman into a humbling state. She would constantly ask when she could go home, where's my *car ( *She almost killed someone by running 3 red lights before we got her to Pennsylvania) She also almost burned her condo down by trying to dry out wet toilet paper in the microwave. She would call me and say she was in Sears Department Store and could I come pick her up. (She worked at Sears when I was a child)

Her dementia during her stay with us seemed to level off a bit and we  visited her daily after work. By getting her closer to us, I believe we added 5 good years to her life. Much of it was spent having fun with us, her grandchildren , going to eat at Wendy's, Thanksgiving and Christmas.  Sadly, at age 93, 15 days after her birthday,  she got asperated pneumonia and passed, with me holding her hand, after being in hospice less than 10 minutes.

There is much more to this story that I have edited out. However, The entire episode left deep scars on us that have just recently healed.

I would not wish this journey on my worst enemy. And, I sincerely pray The Lord takes home me before it happens to me.
Don't go it alone!

[Swampfox762]

41 minutes ago, Rellik said:

Currently.going through this with my mom.  Frustrating to keep telling her how to work the TV, thermostat, and being asked the same question, over and over.  

I subscribed to the Dementia Careblazers chn. It has a lot of hints for the sanity and support of the care giver.  Things to never do with the patient, and things to be forwarded about.  

Pray a lot.  And acknowledge its not her fault.  Some things get easier.  Other things build up, and you want to yell at them for not paying attention.  Like a 4 yo.  

Best wishes.  

I hear ya Rellik.  It's Frustrating sir.  

I've been thru the Remote thing.  Even taped up everything but the "On and Off, Channel Up and Down, and the Volume, up and down".. 

Came back 6 days later, all the tape was off, and she hadn't watched TV in 5 days.  It was "degrading" to her.  Ya can't help wanting to yell at them.  What You...and "I" had/have to learn to understand...It's like water off a Duck to them.  The most Important thing I've learned...and It Hurts me every time I do it, is "Deflect".  Translation?  Fib.  Or...Lie...depend on how ya want to look at it...

"I want to go home"....

Ok babe...Tomorrow..."Want to take a walk"??   Ok.  "Tomorrow never comes",

It's like that EVERY day. Don't get mad, or want to yell...Just Say Ok, and Deflect...

Good luck sir.  It's no fun...

[Swampfox762]

1 hour ago, inthefrey said:

Been watching the posts roll in on this. 

From my own experience.

Mom was fully "there" till about 87, She took care of my adult, handicapped sister till that age at which time my sister was placed in a group home provided by United Cerebral Palsy. With my sister being cared for, Mom was living alone in her condo she had mortgaged to the last penny. She began taking prescription OxyContin for back pain and , of course, became addicted to it. Before she got too bad she told me, "If I ever get so bad that I can't respond to you or recognize you, Please let me go..." I agreed. She had her will drawn up and I was made executor.

One Friday afternoon, I received a call from the emergency room in Annapolis, Maryland,  5 hours away (300 miles away) that mom had been taken by ambulance and was in very serious condition. She had basically burned a hole in her stomach from the pain medicine. She was admitted to the hospital. I was able to speak to the attending Dr. who told me, "...Your mom is very sick and has a perforated stomach..." I asked, "Okay, what are we going to do?.." He said, "Well, there's not much we can do because we feel she would not make it through surgery...We usually just sedate and wait for them to pass..." (I launched on him...) "Look.."I said," You're going to operate on my mother and fix her stomach! I will sign any waiver. She is a strong woman and she will easily survive the surgery.." (Flash forward 5 hours____) I arrive at the hospital as Mom is coming out of the anesthesia... She made it just fine.

This is where my journey through her Dementia began.

The next day I printed out legal documents granting me Financial and Medical POA (Power of Attorney) . I took them to the hospital where she signed them and they were notarized. THIS SINGLE LEGAL ACT saved us from enormous trouble later on.  My wife and I talked at great length about what we should do. We decided to basically kidnap her, yes kidnap her and bring her up to Pennsylvania. I was all based on telling her that we wanted her to spend some time with us and she could stay close at a local "Hotel" . There was a highly-rated assisted care facility a couple miles away and it would be perfect. Mom had an annuity from my dad that would pay for her stay no matter how long. 

So, we set a date and I went to get her. I took all her favorite clothes and her personal items. She spent the first night with us and then we went to the "Hotel". Once mom was here with us a few weeks, we had an estate sale and sold all of the non-personal items in her condo and left it vacant. The Power Of Attorney.  If you care for someone that has cared for you, this IS an emotional rollercoaster. There is very little you can do except be there for them. Visit with them constantly, talk to them, show them pictures, talk about anything they want to talk about.
 

To make this story much shorter, In 5 short years, I watcher her go from a fully cognizant woman into a humbling state. She would constantly ask when she could go home, where's my *car ( *She almost killed someone by running 3 red lights before we got her to Pennsylvania) She also almost burned her condo down by trying to dry out wet toilet paper in the microwave. She would call me and say she was in Sears Department Store and could I come pick her up. (She worked at Sears when I was a child)

Her dementia during her stay with us seemed to level off a bit and we  visited her daily after work. By getting her closer to us, I believe we added 5 good years to her life. Much of it was spent having fun with us, her grandchildren , going to eat at Wendy's, Thanksgiving and Christmas.  Sadly, at age 93, 15 days after her birthday,  she got asperated pneumonia and passed, with me holding her hand, after being in hospice less than 10 minutes.

There is much more to this story that I have edited out. However, The entire episode left deep scars on us that have just recently healed.

I would not wish this journey on my worst enemy. And, I sincerely pray The Lord takes home me before it happens to me.
Don't go it alone!

Thanks so much for your Story Mr. Frey.  There is SO much more to EVERY "story" like this.  I'm just thankful, people are willing to share.  It makes me know I'm not alone...

The sad thing about my aunt...she never had Kids, didn't like her sister, My Mom, and was totally sub servant to her husband.  She "Wouldn't say **** if she had a mouthful". 

But...once he died, she became more "Vocal".  

Dementia is a tough thing to deal with...as relatives of the loved one...

I hate it...being such a "Talker" I am...I can't "Talk" to her...

I hate it...but..."Deflect"...