Family member with Dementia

[seeitrun2006]

Have any of you had family members or friends with dementia?

My mother over the last couple of months has started to forget things, loose things and getting confused over the simplest things. She is also certain everyone in the family is out to get her especially me and my Dad.

She has always been a very stong willed person. She denies anything is wrong which is part of the progression. Luckily my Dad is still alive and able is take care of her at night. He turns 79 next month and still works full time driving a dump truck. It's great he can still work but my mom needs him at home during the day. I can't get him to stay home.

She has an MRI scheduled for this coming Wednesday to make sure it is dementia. They want to rule brain tumor and stroke. My maternal Grandmother started with dementia at 75, my uncle (Mom's brother) started at 78 and now my mom is 75 and has started with it.

It is so sad to see someone so robust and full of life have their brain to cause then to stop living life. What is more difficult is to have family who is in complete denial anything is wrong. My wife is a tremendous help and very supportive! Out of my parents' five kids me and my brother is the only ones who admits mom has a problem.

I needed to vent! Thanks to all my friends for listening!

 

[panthera]

David,

You have my sympathy. It's a tough situation.

My very best wishes for you and your mom - mayhap the doctors will finds something wrong which can be treated.

I know of no family where things are any different - there are always just one or two members who see what's going on; the others either can't or won't. They're the ones who then scream loudest when asked to help the least.

 

[nmaineman36]

Its going to get worse. My partner's mom had Alzheimers at it was rough for everyone. It started off where she would forget things and we figured that was ok for her age at the time...she was 73. Then it went to where she would drive her car and not come home for hours. Come to find out she was driving around lost. We eventually had to take the car away from her and sell it. Now I am not one to sugar coat anything and what came next was something that I can tell you isnt pretty. She would wake up at night and pace all night long. Then came basic things that most people never think about like hygene. She would forget to bathe, brush her teeth and the killer ...going to the bathroom and not know what to do with the used toilet paper. She would take the roll off the tp dispenser and stuff the used toilet paper back into the center of the roll. Or she would stash it under the sink in the bathroom. Then came the incontinence...walking and crapping or pissing herself. We had to have a baby monitor just to listen to what was going on in her apt. She was falling here and there and once she was turning from the toilet and her foot caught the corner of her bath mat. She flipped into the tub and was stuck there for 3 hours pounding on the wall and screaming for us. Our cats woke us up and we went to check on her. We had to call an ambulance at 3 am to get her out.
So after things went even further downhill we had to shop around for a nursing home for her. We couldnt do it anymore and it was killing Scott with his work and then taking care of her...he wasnt sleeping. After my heart attack I was able to take care of her but there was only so much I could do. Anyways getting over the guilt was hard and eventually we found a place for her. But before all that we had to apply for MassHealth for her so they could pay the home. We couldnt afford it and at almost $4,000 a month they wanted there was no way we could do that.
So in the nursing home she was forgetting to eat and by law they cant force them to eat. A year and a half later she passed away in January of this year. So I know all too well what this disease is like. They have new drugs out to help them and slow the disease but eventually the end result is always the same.

 

[jeffg]

Try and see it from her perspective. I'm sure she knows her own family history, and is aware (at least long-term) this road is one-way.

If she's becoming a danger to herself or others then her husband (or you, or someone) needs to take action -- whether she likes it or not. And make sure her insurance policies are paid up -- especially homeowners and auto if she still drives.

 

[maytagbear]

Been there, done that

My mother had Multi-Infarct Dementia, the type brought on by TIA's (mini-strokes). Some times she would be her old brilliant (yes!- Mensa quality) self, and other times, she would be just a very large infant.

The following is MY EXPERIENCE, and nothing more. I am not a professional, just someone who lived this.

Treat yourself gently, and emphasize the times when she's firing on most of her cylinders.

I did all of the care in her last five years of life. It wasn't easy, but I'd do it again, in a heartbeat.

Figure out the ways to make the house as easy as possible for as long as possible. Stair lift, lift recliner, elevated toilet seat, bedside commode, paper towels....

Stouffer's or other premade meals can be a lifesaver.

If people say "May I help?" consider it, and say "yes!" as often as it works.

Good scents help. Some calm, others spark good memories.

Routine, as much as possible, helps.

Make lists of her current medications, keep one on you, keep one on your Dad. Update the lists as necessary.

Get a medical power of attorney. There may be times when your Dad is not available.

My sister (only sib) lives out of state, and could not help on a physical level very often, but she did send money, so I was able to hire someone to come in once in a while.

I also had a cleaning lady then, and she was a BIG help. Ma and Dyanne got on very well, and sometimes I was able to dash to the grocery store or the library when Dyanne was there.

Fortunately, the pharmacy we had at the time delivered.

I needed to forget "perfect," and be content with "good."

It is not easy. There will be temper, there will be tears, but there will also be wonderful times, and you will understand a lot more down the road.

Take pictures, get a video camera-- even 10-15 minutes of short video will be great later on.

Best of luck.

Lawrence/Maytagbear

 

[thomasortega]

off topic...

I´m sorry to hear that about your mother. But i have something really interesting to compare...

What causes dementia? Why so early?

My mom is 74 years old, she never had a plastic surgery, never did a liposuction, never spent thousands of dollars in expensive creams or cosmetic treatments, never went to the gym and she smokes 40 cigarretes a day since she was 18. If you look at her and try to guess her age, you´ll never give her more than 40 years. She's old, but her body isn't. And she's active and lucid as a 15 years old teenager.

She goes to the doctor every 6 months for a complete check up and the doctor always says she'll easily live more than 100 years lucid and healthy (and maybe will find a 20 years old boyfriend to put down her fire). Her heart is strong as a swimmer´s heart and her eyes are accurate as a microscope.

Well, sometimes my mom looks exactly like Mrs. Novotny from Queer as Folk. (She's not a gay activist, but she loves to go to a gay club with me and my friends and she dances all night long.)

My father is 75 years old and his new wife (a former stripper)is 29. LOL
She always says my father is FANTASTIC in bed. and my father´s conditions are exactly the same as my mom´s.

Oh, the only "sport" they play are spaghetti eating competition, glass lifting (lifting a heavy glass of wine from the table to the mouth).

Oh, and my mom hates dishwashers and dryers, so she does all the dishes three times a day and she hangs all the clothes in a line. She also vaccums the carpet every single day. and we don´t have a maid since 15 years ago.
She always says: "Son, the appliances are for lazy people, and lazy people don´t live longer. Ok to use a machine to help you if you have a party or on weekends but for everyday use, the best machines were given by God" (showing the hands and arms).

My father always kept the TV´s remote control next to the tv. so every time he wants to change the channel he stands up.

Wierd, isn't it?

Probably my mom and my father will change my diapers again when I become old.

 

[seeitrun2006]

I have already begun the process

I took care of my maternal grandmother when she became ill early 1985. At that point Granny moved in with my folks. I was 27 and was still living at home with my parents. Granny would get up in the middle of the night and wander. I would get up with her and she would be worrying about things like guest coming in to visit, getting the laundry done etc. I would play along with her and say things like "the guest called and are not coming" things like that. She would then calm down and go back to bed. One time my Granny came out of the bathroom with nothing on but her panties. Breast hanging the whole shabang! Then Granny was at home by herself one day (my mother could not get it thru her thick head to have someone come and stay with her during the day). The phone rang granny got turned around and fell backward into the bathtub. Spilt the back of her head open. Shortly after that the Doctor DEMANDED my mother and her brother to put Granny into a nursing home with 24 hour supervsion.

I had to tell my granny what we needed to do. I tell you without a doubt it was the hardest thing I have ever done in my entire life! At that point I told my mother to pretty step up to the plate and look after your mother. I handled the financial side and my mother worked with the nursing home. My poor granny lasted 9 years in the nursing home. I would go there and she had no idea who I was. I look a lot like my Grandpa and she always mistook me for him.

This is why I have stepped in to take charge of my mother's care. I have her healthcare power of attorney. I've already met with the doctor about mom's condition. Once I have the result from the MRI then I should know more next week. The pharmacy my mom normally goes to not to dispense any drugs to her and then call me. I going to talk to my dad next week to get her car keys out of her pruse.

 

[seeitrun2006]

Mom's dementia

Per the doctor he thinks mom's dementia is Vascular Dementia. The vessels in the brain build up plaque over time and narrow. Sometimes they get completely blocked and cause mini-strokes just like Maytagbear just posted. My mom was raised in the country and eat country cooking. It is so good to eat but so bad for your health. Salt cured ham, Lard and fatback in everything they eat. My maternal Grandfather died of heart disease from smoking and bad diet. Maternal Grandmother died of Dementia. It's almost seeems to run in my mother's mother side of the family. It scares me to death because I take after her side of the family.

 

[seeitrun2006]

I'm sorry

I meant to say earlier I have told the pharmacy NOT to dispense any prescription drugs if Mom comes in and ask for them. She was coming in and refilling her blood pressure medication before the 30 day refill period had passed. But she has not driven anywhere in the last couple of weeks. She told my sister she was getting afraid too drive.

 

[panthera]

David,

You just let it out. Many of us have similar situations to deal with. Don't keep it in. Lawrence gave you excellent advice.

 

[DADoES]

My grandmother (88 years old) is in 2nd stage dementia. She had a mild stroke about 6 years ago, but is still able to function with dressing, bathing, toilet (can't say for how much longer). Diagnosed as diabetic after the stroke, and she cannot understand about food and nutrition, refuses to accept that following a regimen will help or make her feel any better. She had a severe H.Pylori infection, was in hospital for treatment end of April, then some recuperation time in nursing home ... which now she doesn't remember any of that. She tends to not eat very much and has lost some weight, although she was until the last few months in very good condition physically for her age. Mentally her short-term memory is shot, and her long-term memories have slipped in the last few months. A few weeks ago during a "spell" she insisted that her husband never lived at the house with her, that he lived in a house somewhere else that she couldn't describe. Actuality is they built the house in 1949, he died in 1964 (I was 1.5 years old). My parents were married in 1961. I showed her the wedding picture from her living room wall, she knew it was Mom in the picture, recognized the man (my dad) but didn't remember his name.

She lives just up the road from me, so I'm the so-called coordinator of her care. My parents are about 20 miles away, one of my sisters is 40 mins away and the other an hour, so it's not like everybody is separated by thousands of miles across the country. Everybody pitches-in, but Mom has difficulty dealing with granny (mother/daughter dynamic for one thing), and granny is worse with mom than with anybody else about constantly wishing to be dead .. I should be in the grave .. ya'll just shoot me already so I'll be out of the way, etc. Plus mom went through a nightmare several years ago with this with her aunt and uncle (granny's sister, they had no children) ... still dealing with the uncle who is in a nursing home. She finally managed to get Emma & Elmer into the nursing home, and the FIRST NIGHT there, Emma gets up for bathroom (Elmer warned her not to go alone), she fell and broke her hip. Went through the surgery for it, but it was too much a toll and she died a week later.

Granny has been widowed since 1964, living independently for all those years, and is resisting the daily assistance that she needs. She also has only a 3rd-grade education, so simply has no ability to understand a lot of things about healthcare and such. I had to laugh at her doctor who suggested crossword puzzles or word-search games to occupy her time. We have had a caregiver coming on weekdays 8 AM to 1 PM since last summer, it took her a while to accept that. She needed some additional help for a couple weeks with the meds for the H.Pylori infection and that was a big ruckus, change in routine. Mom thinks she needs a caregiver 24/7, but there's no way the money would support that, it's disappearing pretty fast already. I suppose as the condition progresses and more intense care is needed, the only choice will be to apply for financial assistance at a nursing home.

It's an awful thing to say, but it'd be a whole lot better scenario if she'd pass by a fell-swoop than this devastating slipping-away of the mind.

 

[seeitrun2006]

My wife has lost both parents to cancer. Her mother died in June 1985, her dad died in Sept. 2006. She said them having cancer was bad but having someone with dementia is even worse.

 

[dynaflow]

know all to well

my maternal grandmother has Alzheimers . she was always my heart loved her more than any other relative , but over time while my grandfather was sick she turned into the most hateful mean old lady imaginable but u just have to let it slide off ur back she is in a nursing home now after 9 yrs she can no longer speak or walk but at 95 it would be a blessing for the lord to take her now
just rtemembert the good times and all u learned from her and love her back

 

[goatfarmer]

My aunt has dementia. She suffered from migrane headaches most of her life, and the doctors have said the medications she took contributed to it.

My uncle, in his 80's, has his hands full, keeping an eye on her. Has to lock windows, from the outside, because she will leave, and wander away. She calls 911, and tells them she is being held prisoner in her own home. Things like that.

That is a condition I would not wish on anyone.

kennyGF

 

[andrewinorlando]

My grandmother had dementia, then alzheimers set in. Fortuntately, we were able to get her into a nursing home nearby that took very good care of her. The important thing to remember through all this is that you have to do what is best for THEM, and sometimes that means that at-home care is not sufficient for medical or safety reasons (yours and theirs!), let alone one's own mental health. I don't think there is anything worse than watching someone slowly lose their minds to the ravages of this disease. Granny didn't last terribly long, but the funny thing is the disease had the effect of changing her personality for the better...she was always a mean, bitter old woman. Dementia made her a nice, sweet little old lady. But you have to do away with the whole notion of guilt in this situation, and do what is best for the afflicted. There really is no right answer. They're not going to get better, it's just going to get worse. Denial is our worst enemy, while love, compassion and clear thinking become our very best friends.

 

[laundromat]

I have a friend (Frank Hopkins) in Baltimore who has this and he is in its later stages.When it began,he attempted suicide.My friend,Donald Bromer,has been one of Franks closest friens and Frank put Donald through college(Maryland Institute college of Art)and has owned the business Donald has managed for 35 years now.Frank had decided to leave he marke on B'more's Harbor Place shopping mall and Don was insistant they join together in buying a house and opening a new store away from the mall scene.Frank was otaly against it but could not choose an alternative source of income.Don continued "nagging Frank about it unil Frank gave in.They moved in to a new house not far from Johns Hopkins Hospital and about 3/4 mile from their new store.A week after their move,Frank tried to kill himself and got admitted to GBMC(Greater Baltimore Medical Center)where they diagnosed him with dementia.He's had numerous stairway falls and many fractures from them.When I went there to bury my father,I stayed with them and for three days,Frank would place a wadd of money in $100 bills on the nightsand in the guestroom where I was staying.I was puzzled and imediately brought it to Don's atention and he said that because of Frank's upbringing and the way I was making meals for them and cleaning the house during my stay,Frank was thinking I was their houseboy and paying me what he though my work was worth.Don took the money and put it back in Frank's account.We counted and after all was said and done,it totaled $1500!!!! I didn't make sense.Don said he was used to it but was deffinately over it.I wouldn't wish that on anyone!

 

[jamiel]

Fortunately, there's plenty of money on both sides of our family so that is not a worry. My mother's line is very long-lived...her mother died Memorial Day at 96, her mother died in 1992 at 104 y.o, her mother in 1970 at 100 y.o.

My grandmother moved herself into a retirement center when it opened in 1994 (drove herself...) which (actually) followed her mother who did the same thing in 1970 (moved into Oral Roberts' University Village which had just opened in Tulsa...she couldn't abide Oral's religious views but she knew a good thing when she saw it...she MORE than got her $$$ out of it)

Anyway, we aren't a terribly close-knit family, so honestly, we're pretty cool with the best retirement centers money can buy. If you've got the opportunity with your parents, my grandmother's move into Kendal at Oberlin in 1993 was the best thing she ever did. Kendal is based on Quaker principles (sometimes to a fault) and is truly seeking to be a great place to live. They put the centers near small liberal-arts colleges (for stimulation etc) and visiting her was extraordinarily stimulating and pleasant. (Interestingly, their Quaker attributes include being extremely class-conscious and they definitely tried to incorporate diversity in their residents through having a scholarship fund, for instance. Also, there were a few gay men and lesbians in the population and it felt like a very open place to that.

Good topic guys. Godspeed to those of you who provide hands-on care for your loved ones.

 

[appnut]

My mom was diagnosed 3 years ago--my dad wasn't present when she was given the information. She either went into denial or forgot. My dad was officially told in early April while she was at a Dr.'s office appointment for another reason and was told it had progressed such that, and aggresively, she would not be going home. The last lucid conversation I had with my mom was Good Friday, their 64th wedding anniversary. She's been in an extremely nice Altz/Dimensia facility nar The Galleria since latter April.

 

[paulg]

I concur

...I also concur with Lawrence's advice. Supported mom who suffered varying degrees of dementia. Symptoms actually improved over time with treatment. (My mother's situation was TIAs with Aphasia).
However, true cause of the dementia ultimately was not good.
Definitely accept help and allow friends to check on her. Take the car keys away. Print out Lawrence's suggestions and keep them around as they are so true.