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How long did your loved one live after diagnosis?
Lindarosr
Posted: Thursday, October 6, 2016 1:25 PM
Joined: 9/27/2016
Posts: 60


My DH has just recently been diagnosed with Alzheimer's although he has shown signs for years. I think he is probably in the moderate stage with some daytime confusion but much worse at night. Once your loved one was beginning moderate stage how long did they survive?
Ukie
Posted: Thursday, October 6, 2016 2:08 PM
Joined: 12/16/2013
Posts: 352


My DW was diagnosed in August 2011 and passed away in November of 2015. Looking back symptoms started in 2009 but she hid it well.
Moish
Posted: Thursday, October 6, 2016 2:11 PM
Joined: 7/29/2016
Posts: 319


My mother didn't have Alz -- she had heart failure and then stomach cancer, but dementia arrived (or became very apparent) about six months before she died. In hindsight she had it far, far longer than we realized, she kept calling 911 because she was having panic attacks. It wasn't until I brought her to live with me that I saw they were not panic attacks, it was sundowning. And they began to come thick and fast toward the end when she also had episodes each morning too. She would have times when she had no idea where she was or how she got there. She hadn't been able to read a book for many months, or concentrate on a movie, or concentrate on anything really. Everything got her agitated, everything. 

She was well into her 90s and had been speaking English for over 70 years, but at the end she went right back to French, her original language, especially with me. 


dayn2nite2
Posted: Thursday, October 6, 2016 3:07 PM
Joined: 6/20/2016
Posts: 2554


My mother was diagnosed in 2006 and was in mid-stage and very physically healthy, died in 2012 at age 70 of a probable coronary event.  Her symptoms were becoming evident as early as 2001, since I could detect something was wrong on the phone and ended up moving back home to take care of her.
Lindarosr
Posted: Thursday, October 6, 2016 6:19 PM
Joined: 9/27/2016
Posts: 60


Ukie was your wife in good physical health? My husband has heart disease and diabetes. My daddy passed away from Alzheimer's years ago and I was his primary caregiver during the later stage but I can't remember how long the moderate stage lasted. It's certainly different when it's a spouse. Although I understand what's happening to him it still comes as a shock when the late evening confusion hits and completely changes this man that has taken care of me for 22 years. Now at times I feel like he wants to hit me .
Bjjca
Posted: Thursday, October 6, 2016 8:14 PM
Joined: 4/29/2013
Posts: 1259


My husband was diagnosed in 2009, although he had symptoms in 2005.  (He was 19 years older than me, so taking care of him was easier for me than others.). He was 79 when he was diagnosed, very healthy, a runner, and he worked out at a gym 7 days a week.  After he was diagnosed, he got lost on a run and I had to call the police to find him.  When hewas diagnosed he was in the moderate stage, between stage 4 and 5.  He steadily went through all the stages until he had a heart attack in 2014.  The heart attack was relatively minor, but it drove him into stage 7.  He died 10 months later.
Nanateach
Posted: Thursday, October 6, 2016 10:35 PM
Joined: 12/2/2014
Posts: 121


My husband was diagnosed in August 2014.  He died June 13th of this year (less than 2 years).  He did have other health issues such as: bad diabetic, had a stent in his heart, bad back and had surgery for that.  I also noticed some things he was getting confused about in April and May of 2014.

 


Ukie
Posted: Friday, October 7, 2016 9:48 AM
Joined: 12/16/2013
Posts: 352


Lindarosr,

My wife was in good health. For about 3 years we walked 2 to 3 miles most mornings. She wasn't on any other medications except for the ones for Alzheimer's and anxiety. DW was only 65 when she passed away. Both of my wife's parents had Alzheimer's.

This time last year Kathy was admitted into a behavioral center to try and adjust her anxiety medications. There was a rapid increase in agitation/anxiety. No UTI at that time. I had taken Kathy to our PCP and neurologist 3 weeks prior for blood work, etc. Kathy was transferred to a hospital on 11/7/15 for pneumonia. Katy could no longer swallow on 11/18/15. Passed away on 11/21/15.

I must say that the hospital and staff were fantastic. Very caring and kind. Kathy was very comfortable, calm and content in the hospital. They took very good care of her and were very helpful.


Bonus
Posted: Friday, October 7, 2016 11:07 AM
Joined: 1/27/2014
Posts: 242


My mom was diagnosed with MCI in 2005. She didn't follow doctors instructions though in terms of proper eating, meds, socialization, exercise so she progressed. In 2009, her doctor recommended she not live alone. She moved to Independent Living in a CCRC.
She was diagnosed with vascular dementia in 2012 and moved through the levels of care in the CCRC. She passed in August 2016. 

Bicoastal
Posted: Tuesday, October 11, 2016 11:27 PM
Joined: 11/30/2011
Posts: 269


My husband had his first diagnosis of MCI in 2007.  He was 71.  He was formally diagnosed with Alzheimer's in late 2010.  We were able to lead a fairly normal life for about 3 years after that.  By early 2014 he was incontinent and too confused to be out of my direct line of sight. He died in early 2016 at age 79.  Stage 7 was brief, thankfully.  He had controlled high blood pressure starting in his 60s but was otherwise athletic and healthy at diagnosis.  He developed several serious health maladies during his final two years.  

Each stage is excruciating and each brings its own blessings.  Advice?  Don't neglect your own health and sanity -- this could be a long ride.  


Lindarosr
Posted: Friday, October 14, 2016 8:08 PM
Joined: 9/27/2016
Posts: 60


I am 51 and my husband 71 so I'm blessed to be younger  and in perfect health and plan to keep him at homeNO MATTER WHAT. I don't think it's bad for those who have no choice to do so I just feel with my age and with my children's help maybe I can do it. He goes days and days with only mild confusion and makes me hopeful that maybe he's really ok then he had a horrible episode and it seems to shock me every time.
dayn2nite2
Posted: Saturday, October 15, 2016 3:08 AM
Joined: 6/20/2016
Posts: 2554


Hate to burst your bubble, but never say "no matter what" because this disease can kill you, too.  Hopefully the children you are talking about are both of yours and they're just as invested as you are in setting their entire lives aside for years to help.  I can't think of any stepchildren who were happy to help change shitty diapers for someone who wasn't their biological parent.
Sea Field
Posted: Saturday, October 15, 2016 8:45 AM
Joined: 8/5/2012
Posts: 1872


My husband had a traumatic brain injury that immediately threw him into the middle stages.  He then declined over the next 8 and a half years before he finally passed away at age 70.  He was healthy and fit other than the dementia.

I was 15 years younger than my DH and I did keep him home all the way through.  I won't lie.  It was incredibly difficult and it took everything I had.  And then some.  But I am so very grateful we were able to do this.   I did have help.  I utilized an adult day care for a few hours each week.  For a while I was able to hire a sitter to stay with him while I went somewhere for an hour or two on a weekend or evening.  But eventually he became too feisty and they all declined being alone in our home with him.

 Whenever he was home for a visit, my son - not my husbands biological child - helped with dressing, feeding and changing diapers.  Did he like it?  Who does.  But he always treated DH with respect and care and love.  They met when my son was a toddler and my DH adopted him after we married.  DHs own biological son could not bring himself to do these things for his dad.  Just saying - it depends more on the personality of the caregiving child.  Not necessarily their biological relationship.

You do need to know what your line in the sand is.  For me it was violence.  I knew I would not keep DH at home if I was at risk of violence.  He started to act out but we were able to calm this back down with medication.  For others the line in the sand is incontinence.  Or if your own health is declining. 

I wish you the best of luck.  This can be a very long road.  It is important to replenish yourself in whatever ways you find.

Cynthia   


Lindarosr
Posted: Saturday, October 15, 2016 8:53 AM
Joined: 9/27/2016
Posts: 60


I did it for my dad and I will do it for my husband. No the children are not his biological children but when you devote your life to raising little girls that you didn't have to take care of and treating them just like your own flesh and blood it means something in our family. He changed their shirt diapers and they will change his. Why so mean??
Lindarosr
Posted: Saturday, October 15, 2016 9:03 AM
Joined: 9/27/2016
Posts: 60


Thank you Sea Field
acb10
Posted: Saturday, October 15, 2016 9:09 AM
Joined: 5/31/2014
Posts: 124


Although my mother started showing signs in 2004/2005 or so, she had first diagnosis around 2008 when she was prescribed Aricept and she was in moderate stage - she could no longer follow recipes or drive.  She started repeating a lot.  We managed ok for a few years. Here are some of the ensuing "milestones":  Around 2011 I had to start helping her get dressed but I could still leave her alone while I went to work. Mid 2013 I started her at day care 3 days a week, January 2014 I started having home health care aide, March 2014 police called me for the 2nd time that she was wandering in neighborhood and therefore I then got 3 more health aides and she was never alone after this. Around this time, I really had to start to take charge in her toileting clean-up.  July 2014 she started with paranoia, anxiety and fear - couldn't be left alone even within the house. Sept 2014 I had to move downstairs and sleep in the same room with her at night, Dec 2014 I would sit next to her and she asked me "where's April?", I answer "I'm April" and she would reply "really?"  Once she asked "April isn't dead, is she?".  That knocked me for a loop. February 2015 we have multiple snow storms with huge piles of snow outside the door - she wants to go out.   August 2015 we had fecal impaction - UGH - and with more toileting accidents we started "pull-ups" and daily doses of miralax.   Oct 2015 added a fifth home health aide and also got a sixth home health aide from local senior social services.  Combination of aides with her 12 hours a day, and then I was with her 12 hours a day.  Food was a problem and she basically lived on Boost, rice pudding, oatmeal, sweet potatoes.   November 2015 she went on hospice, January 2016 stopped day care,  January and February 2016, had some very bad spells and also her sleep patterns changed where every 2 or 3 days she would lie awake, eyes wide open all night, agitation with bedding and raising her legs and knees every 15 seconds, and trying to get out of bed every 30 seconds. I couldn't sleep for fear of her falling. End of February as her money was just about gone (aides cost about $6000 per month) and she was accepted for Medicaid, I had to make the tough and very emotional decision to place her.  Wonderful nursing home close by so that I could go every day, caring staff, she was very, very agitated.  I still had to send a couple of our  aides there for a few hours every day as nursing home staff couldn't just sit there and watch her.  Also had to get church ladies there a few times to sit with her. April 2 morning I got call that she had "changed" overnight.  I was with her all night, holding her hand and she passed away  April 3 morning.

I write this so that you can see perhaps what may be in store for you too. It's not a pretty sight the last couple of years.  I wish I had known more specifics about the disease from the start rather than having to deal with them, issue by issue.  I also know now that her decline really started in January of this year.

April

 


dayn2nite2
Posted: Saturday, October 15, 2016 1:08 PM
Joined: 6/20/2016
Posts: 2554


Lindarosr wrote:
I did it for my dad and I will do it for my husband. No the children are not his biological children but when you devote your life to raising little girls that you didn't have to take care of and treating them just like your own flesh and blood it means something in our family. He changed their shirt diapers and they will change his. Why so mean??


I'm not being "mean."  You, however, are speaking for your children and assuming they'll set their lives aside to help you in what YOU want to do for your husband.

How much have you read here?  While I think it's commendable you would sacrifice years of your life to this endeavor, I think it's too much to ask an adult child to do so.  This means time taken out from their careers (and contributing to their own Social Security, retirement) and families.  It's unacceptable to ask that.  You were the one who married him, they did not.

I'm hoping you and your husband are very wealthy and can afford a lot of in-home help.  We're talking 5 to 10 years at least.  


Lindarosr
Posted: Saturday, October 15, 2016 8:34 PM
Joined: 9/27/2016
Posts: 60


dayn2nite2 wrote:
Lindarosr wrote:
I did it for my dad and I will do it for my husband. No the children are not his biological children but when you devote your life to raising little girls that you didn't have to take care of and treating them just like your own flesh and blood it means something in our family. He changed their shirt diapers and they will change his. Why so mean??


I'm not being "mean."  You, however, are speaking for your children and assuming they'll set their lives aside to help you in what YOU want to do for your husband.

How much have you read here?  While I think it's commendable you would sacrifice years of your life to this endeavor, I think it's too much to ask an adult child to do so.  This means time taken out from their careers (and contributing to their own Social Security, retirement) and families.  It's unacceptable to ask that.  You were the one who married him, they did not.

I'm hoping you and your husband are very wealthy and can afford a lot of in-home help.  We're talking 5 to 10 years at least.  



Lindarosr
Posted: Saturday, October 15, 2016 8:40 PM
Joined: 9/27/2016
Posts: 60


No day2night this is a family decision and we have been through the this before and yes we have read many horrible things about this disease and no we are not wealthy. I appreciate your opinion but if you are trying to beat me down life has already done that. But thanks for the encouragement.
dayn2nite2
Posted: Saturday, October 15, 2016 9:41 PM
Joined: 6/20/2016
Posts: 2554


You are no more "beaten down" than anyone else here on this board.  You have your own idea about what to expect but life has a way of correcting the picture for you.  Never say never is the motto for this disease, and should your children eventually decide to live their lives (as they should) instead of caring for a demented patient for years, please allow them to do so with no blame.
anib
Posted: Tuesday, October 18, 2016 12:06 PM
Joined: 7/29/2014
Posts: 217


Hi Linda,

My Mom was diagnosed in 2010, and lived till September of 2015.

May I say I commend you on taking on this task, and it can be done. You want to keep your Husband home, that is YOUR CHOICE.

Listen, my parents requested that they be able to pass in their own home. They raised 4 children, put us ALL through college,  They were there time and time again to dig my other siblings out of a hole when they were in trouble.

So hey, So what??? I quit my job...I can find another one...I didn't put in SS for 5 years, so what?? I pulled my retirement out 15 years early, so what???? My parents NEVER asked for much, so for me to give up this time was a NO BRAINER. IN MY OPINION

Unacceptable to ask really?????

OMG, everyone SHITS, what is the big deal about changing a diaper???????

Please keep your head up, and know you are CHOOSING to do this, and have a lot of people that will be there to back you up on your decision.


Bjjca
Posted: Saturday, October 29, 2016 2:14 AM
Joined: 4/29/2013
Posts: 1259


Linda, all of our experiences are individual, and each Alzheimer's patient is different.  When my husband was diagnosed, I planned to keep him at home, no matter what.  I was 19 years younger, we had 7 children between us, and it seemed reasonable.  I took care of my husband for 6 years.  He was angry and often violent, he became incontinent early so I changed diapers for 4 of those years.  My physical and mental health deteriorated.  Our children were grown, had jobs and families and they helped when they could, but it wasn't often.  I was able to hire help, but it was still difficult, yet I kept him at home.  In 2014, he had a heart attack and advanced into end stage Alzheimer's--he could no longer walk, he was in a wheelchair, he couldn't feed himself, he couldn't talk.  Our children and the doctors insisted he go into memory care which I agreed to.  As it turned out, he loved memory care, they had so many activities he got involved in, he was happy for the first time in years.  I was with him every day and really enjoyed our time together.  When he went into memory care, I thought I had failed him, but it turned out I gave him a gift.