life expectancy for those with dementia
annrlilly

United States

#41 Jul 12, 2010
My mom is 93 yrs. old. Her dementia has accelerated dramatically in the past two weeks. She doesn't really know me or my brother. She cannot do the simplest of tasks. I have tried preschool puzzles, simple art projects, showing her pictures of the family. She seems to be frustrated by this. I want to do the best thing for my mom. Should I bring her to our home? I need input!
Alice

Stewartstown, PA

#42 Jul 29, 2010
To Ann Lilly: If it would give you comfort to bring your mother home, so you don't beat yourself up later, you could try it. However, honestly, it probably will not do any good. There is no miracle that can be worked here to bring back someone with dementia, especially when they get to a certain point. We can't put our minds around the fact that with dementia, people completely lose any kind of short term memory and that is why they cannot concentrate on a magazine article, complete an art project or really even watch TV - they can't remember from the top of the page to the bottom, what they are supposed to be doing, what is happening with the TV show.

They do relate to emotion and remember how they feel about something, if not why. The best thing you can probably do with your mother is to speak very kindly and cheerfully to her when you see her; that way she will remember the positive emotion.

Some people have success with their parents watching sports on TV - short bursts of action, and they don't have to remember a plot or what is going on, just be in the moment.
RoseAnne

Lexington, MA

#43 Jul 29, 2010
My mother too has deteriorated with her dementia symptoms. When I read your post, it hit home hard. My mother has been in and out of facilities because we wanted her home. We knew we were her best caretakers. But of course it became too much for us, and unsafe for her. I want to warn you about the psychiatric experts adjustting your mothers meds. They started giving my mother anti-psychotics and I noticed a more rapid decline. My once happy mother also got violent and agitated with people. I'm in the process of making them take her off the anti-psychotic drugs. Depakote and Serequel are what they were giving her. I want to add, that Serequel is not FDA approved for elderly dementia patients and has been known to cause death in the elderly. I just keep asking myself, "Who's getting the kickbacks?" Let these wonderful people with this awful disease deteriorate on natures time table. I don't need a psychiatric "expert" hurrying it along with his drugs so they can line their pockets.
Lisa

Harlingen, TX

#44 Aug 9, 2010
My mom was diagnosed with dementia about a year ago but we, her children, knew something was wrong for the past three years. It is so sad to see a little less of your mom each day. The Exceleon patch has really helped. She has been on low dosage for the past 10 months. We feel we need to up that dosage and hopefully help more as she is still deteriorating. I still pray God will renew her mind and that she will be healed. It is so cyclical how the child and parent switch roles. Mom and dad care for you all those years and then you turn around and care for them. We should look at this as a privelege and an honor. I know it's easy to say and I get so sad thinking about what is to come. I just want to look at the positive side. We can all grow from this experince. I'm crying with you and pray for you all in Jesus' name.
dadsgirl

Denver, CO

#45 Aug 17, 2010
Dementia is an vicious thief that steals you're loved one and leaves a vacant stranger in their place. My Dad is 95 and has had dementia for the last 3 years. He worked and scrimped for 60 years to have a retirement and is now spending every dime on in home health care. Has too much $ for the Veterans Admin or Medicare to assist. Hopefully the health care reform will do something to alleviate this situation. I'm spending my money before I turn 80 so I can enjoy the fruits of my labors
Bevery Riley

Clarksville, MD

#46 Aug 20, 2010
My brother was diagnosed with Demential at age 54. He is in excellent physical condition but he is moving from stage 5 to stage 6. Does the early age dementia patient stages last longer? I am his caregiver and I cried for the first time last night. I just excepted to myself the emotional strain of watching a loveone deteriate. The physcial work is hard, especially with the incontience. I don't know how much longer they will except him in the two day a week adult daycare because of he now refuses to allow them to to assist him with the bathroom. I need this time for my sanity.
RoseAnne

Springfield, MA

#47 Aug 21, 2010
If the decline is that drastic in such a short time. Have her checked for a UTI. Dementia victims are prone to them, and they really have negative effects on their disposition.
annrlilly wrote:
My mom is 93 yrs. old. Her dementia has accelerated dramatically in the past two weeks. She doesn't really know me or my brother. She cannot do the simplest of tasks. I have tried preschool puzzles, simple art projects, showing her pictures of the family. She seems to be frustrated by this. I want to do the best thing for my mom. Should I bring her to our home? I need input!
Ella

Rochester, NY

#48 Aug 28, 2010
I am walking the same road as all of you who have posted with descriptions of their loved ones plight with late stage dementia. My Dear Husband after retiring at age 73 - and having worked from age 19 - is in stage 6 at age 76. He has his good days and bad days. When he is good - I am good, when he is struggling, then I struggle with him It is really terrible. My saving grace are my grown children who walk with me on this jouney. It has been very difficult to diagnose exactly what has caused this dementia but we know it is vascular. Probably multi infarct. My husband took care of himself - never smoked cigarettes, never drank to excess and exercised everyday. His heart is strong and his B/P is low but there is terrible damage in the brain. What a shame. We have all shed many tears over this sad happening to our loved one.
RoseAnne

Springfield, MA

#49 Aug 29, 2010
I feel like there's no rhyme or reason. My 86 yr old mother has had a multitude of health issues. High blood pressure, mitral valve prolapse, atrial fibrillation, morbid obesity, diabetes and she's still going strong. I have accepted that I've lost my mother as I knew her. I'm now accepting my mother as she is. She still loves to hold me and kiss me, and most times we can still find something to laugh about. I hold on to those moments for dear life and thank God for them. At the same time wondering why His will is to make her suffer horrific dillusions and halucinations. I don't want her to die frightened. I only can hope that she goes feeling love.
Ella wrote:
I am walking the same road as all of you who have posted with descriptions of their loved ones plight with late stage dementia. My Dear Husband after retiring at age 73 - and having worked from age 19 - is in stage 6 at age 76. He has his good days and bad days. When he is good - I am good, when he is struggling, then I struggle with him It is really terrible. My saving grace are my grown children who walk with me on this jouney. It has been very difficult to diagnose exactly what has caused this dementia but we know it is vascular. Probably multi infarct. My husband took care of himself - never smoked cigarettes, never drank to excess and exercised everyday. His heart is strong and his B/P is low but there is terrible damage in the brain. What a shame. We have all shed many tears over this sad happening to our loved one.
CPJ

Sanford, NC

#50 Aug 29, 2010
Another example of God's hand leading me through this journey of dementia with my 85 yr. old mother. I stumbled across this chat tonight as I was searching for more answers. I share all the same emotions as each of you. I think my mother's dementia probably started in or around 2005...she has lived in our home since 1995. I think I put the dementia off to her not hearing well. She had a twin sister who also started with dementia around the same time. She passed away this past January. The twin's doc said my mom would not be very far behind. In the middle of June, it was like a thread snapped and my mom went from just being "goofy" to not eating...having anxiety attacks...and saying she couldn't walk. We ended up in the hospital with dehydration and a uti. After three days, she went to a very good nursing home in our area. A word of warning...my mother was way too medicated...after about 2 weeks my brother and I went to the nursing home doc and asked him to take her off of all antidepressant type meds. She was like a flower opening back up. She started eating...holding her head up...and became more like herself again. She has improved physically but is still confused about most things and still says she cannot walk. She is still in the nursing home...but like someone else posted...she thinks she can come home and take care of herself. Unfortunately she has developed two pressure sores on her leg and has MRSA in the affected area. I like most of you have prayed that God would take her home so that she does not have to suffer the indignity of this disease...but on a good day...the selfish part of me is so thankful that I can go in and help her put her makeup on...fix her hair...kiss her and tell her I love her...even though when I leave she won't even remember I was there. The only thing I know to say to each of you is that...we did not cause this...nor did our parent...we are not in control of this...all we can do is pray for God's mercy and guidance...I am so thankful that my mother raised me in a Christian home because without my faith I could not make this journey. My heart felt sympathy goes out to you all...and no...no one can understand what we are going through until they are there. God bless you all and your precious loved one.
CJT Cleveland OH

Pittsburgh, PA

#51 Sep 2, 2010
My mother is will be 73 next month and has dementia. I believe she is stage 6. I am 48. I share in all your thoughts and feelings. It's a rough life for everyone involved. She was on Aricept but I took her off of it as she became mean, angry, and crying all the time. Once I quit giving it to her all is good again (or as good as it can be) She has always been happy and laughing but the pill just flipped her. As of now, she is begining to withdraw herself alot more than usual and stare off alot. She is at home and my son is now living with her and I relieve him when I get off work and on weekends. When she starts not eating and the incontinence kicks in, I'm not sure what I'll do. Very sad.
carmen

United States

#52 Sep 8, 2010
hi my mom has dementia last stage and i aswell hope that she passes soon and peaceful.i cannot bearto see her another day,suffering like that.the worst part is that i am 30 years old at home with my two year old which by the way knows somethings wrong with grandma.and on top of that i watch her from early in the morning until he comes home from work.i am sorry for all who suffer from this ad all the family memebers to like myself have their hands tied behind their backs.but know this that GOD IS LOVE AND ALL IS WELL.
Carrie

Honolulu, HI

#53 Sep 24, 2010
My husband had a stroke March of this year. This has resulted in "Stroke induced dementia" The doctor has given me a sample Aricept. She has left the decision up to me to give or not give.
I have been reseaching Aricept online, and it appears the side effects can be change of personality among numerous others. Also, the drug only helps with those abilities he still has.

He is 83 yrs old, but like no 83 yr old man you know. Has worked out over 50 years and is still going to the gym -- but doing less. Every day, I see I am losing little bits of him.

I would appreciate feedback and advise about giving the drug.
Thank you
Alice

Stewartstown, PA

#54 Sep 27, 2010
To Carrie: Well, I hate to say this, but I don't know anyone who has used Aricept that said it did any good. As you already know, since it doesn't restore lost abilities, you can't judge it by any normal standards of improvement. We have had my mother in law on it for about 2 years. She hasn't had any side effects. We don't really know if it has helped or not - to say a drug slows down the decline doesn't tell you much, would she be at this level without the drug or would she be worse? we have no idea. If it were up to me, I wouldn't give it - very expensive drug for questionable benefits. Your husband might be different but a lot of people in this situation won't take the medications you give them - my mother in law was hiding the medication - putting pills in her pocket, napkin, etc., so unless they absolutely have to take something, I think you are better off not bothering.
CJT

Pittsburgh, PA

#55 Sep 27, 2010
Alice - agreed. My mom was also hiding the pills. Isn't if funny how they don't know what day it is, etc. but they can be so sneaky and go to great lengths to hide things? ugh. Totally appreciate ALL OF YOU on this site.
Lisa

Orlando, FL

#56 Sep 27, 2010
That's what I like about the Excelon patch. You put it on their back where its hard to reach and they forget it's there. It also doesn't seem like medicine to them more like a bandaid.
RoseAnne

Lexington, MA

#57 Sep 27, 2010
Wanted to reply about meds. My mother has suffered with dementia for about 5 years. In the very early stages, it was just a matter of her "losing her words". We did start her Namenda, which helped so much. It just gave her the ability to think a little clearer, finding her words and thus elimnated her frustration of not being able to express herself. She is now in late stage and her doctor just out and out said Aricept won't help. I know this is a very difficult time for you, but your Dad could live many years in steadily declining mental ability. I know you're not thinking long term right now, because we didn't either. Talk to him now, and find out if he wants to be DNR. It's a very difficult conversation, but take it from one who knows, it's a conversation that you will not be able to have with him when the time comes. My prayers are with you. There is a long road ahead.
Carrie wrote:
My husband had a stroke March of this year. This has resulted in "Stroke induced dementia" The doctor has given me a sample Aricept. She has left the decision up to me to give or not give.
I have been reseaching Aricept online, and it appears the side effects can be change of personality among numerous others. Also, the drug only helps with those abilities he still has.
He is 83 yrs old, but like no 83 yr old man you know. Has worked out over 50 years and is still going to the gym -- but doing less. Every day, I see I am losing little bits of him.
I would appreciate feedback and advise about giving the drug.
Thank you
carrie

Honolulu, HI

#58 Sep 27, 2010
Thank you all so much for your input and help.

I am wondering in the research I have been reading it gives the stages he will go through. I guess there are 6 to the final one. I would like to know if anyone can tell me if there is an average lenght of time between these stages? Do they speed up with each stage?

My heart is breaking

Yesterday, he asked for help putting in his contact lens. I had to show him where to place his hands on his face. So far, it has been what I consider mild---forgetting words, losing things, forgetting to put toothpaste on his brush.

I know I must have a conversation with him about end of life, but can not bring myself to.

He does not want to take the meds either, but the doctor said I should be the one to make the decision. As she said, he can even "fool" her until she gave him the cognitive tests and he scored low.(19) He at this point I would say he is 75% of the real him. But some days are far worse than others and some far better.

I am living in Hawaii and I have no family or friends support here.(our dream retirement) It is just me and him. One doctor told me take him to the Mainland, but he loves it so here,Plus I read by changing their environment it will/can speed them up greatly. Thoughts on this also please.
RoseAnne

Lexington, MA

#59 Oct 3, 2010
I wanted to share with everyone some information I found, just Googling "What do dementia patients die from?" The answer was enlightening, not good, but it's helping me accept my wonderful Mother's decline.

Dementia is a fatal disease with no cure. Our loved ones are dieing from losing brain cells. Period. They're not going to get better. They will get sick during the 4 or 5 years that they steadily decline and we will do whatever we can to save them, but it doesn't matter. They're going to die a horrible undignified death.

My mother is 7th stage now. She's aspirating her own saliva because she's losing the ability to swallow. I wish I had let her go, the many times she's been ill over the past 5 years. I can't even feed her a sip of water without her choking.

The only advice I can give to people is talk to your parents early on, while they still have some understanding of their condition. Find out what THEY want. Don't wait until it's too late to ask them.

I truly apologize if this upsets anyone, but acceptance and understanding will go a long way to healing and relieving any guilt you will feel.
Alice

Stewartstown, PA

#60 Oct 4, 2010
I have done a lot of research about how long the different stages last. Since my mother in law is incredibly healthy at 83, not one physical problem, and her mother lived to be 98 also with dementia, we are concerned about being able to pay for care for such a long time if it comes to it. I had heard that people lived on average 5 years after onset but I think that might be for Alzheimers. Some people seem to plateau and not go beyond a certain stage.

Regarding the DNR, Margie's doctor suggested this when she was first diagnosed, along with our getting power of attorney and taking over her finances (she was completing forgetting to pay bills). Fortunately or unfortunately, when they reach a certain level of confusion, you can get them to sign anything (another reason why it is important to make sure there are trustworthy caregivers involved)and you want to do it before they get to the stage where they are paranoid and don't trust anyone.

Right now, it is costing about as much to keep Margie in her house with a part time caregiver (we don't pay her as a live in, but she asked to move in and we are letting her live there rent and board free in return for keeping an eye out, paying her for 6 hours a day for preparing meals, making sure Margie changes clothes, try and keep her oriented), and a housekeeper who comes in one day a week. It would actually be cheaper to get her into assisted living in s shared room and rent her house, but my husband feels strongly that as long as she has neighbors she still knows and can walk safely throughout her neighborhood (she never gets lost there) plus go to her bowling 3 days a week, she is better off. Since it is impossible for them to learn new things, the turmoil of being in a new place where she doesn't know where the bathroom is and everyone is strange, would have to be overwhelming. One day.

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