I am new to this forum and looking for support

RetiredTeacher

My DH got sick 3 yrs ago and we worked our way through Kaiser trying to diagnose problem.  He has had several TIA's, and several vascular issues.  I've noticed decreased executive function for the past 5+ yrs.  Diagnosed with mixed dementia with nuerogenic bladder and bowel.  From reading about the 7 stages, I believe he is stage 4.  No way he could manage on his own.  He gets really anxious if I leave the house without him.  He now goes everywhere with me and finds me if I go to another room when he drifts off.  He falls asleep frequently throughout the date and is up with bathroom issues multiple times every night.  He has ALZ but the reality is WE have ALZ.  I love him and am supportive but am really struggling losing my independence.  He's 73 and I'm 65.  I'm getting d3pressed realizing I retired early to travel with him and our future reality is so different.  Its really difficult to remain positive.  I am sorry all of you are in a similar boat but thankful I'm not alone.  Sure feels like it sometimes.

jmlarue

Welcome Teacher - sorry you need to be here, but glad you found us. My DH also suffers from VD, which was diagnosed via an MRI that showed the damage from chronic micro-vascular strokes over a number of years. His Geri-Psych has tacked on "possible ALZ," only because his mother and 3 maternal aunts all died with that form of dementia. I tend to discount that because of the fast progression that more resembles stair steps, rather than a more gradual and steady decline over 12+ years that ended in death. He is about 6 years in from the time of undeniable symptoms. To be fair, I could push that timeline out another year of shrugging my shoulders and rolling my eyes over odd behaviors. He is presently around Stage 6e. He suffered another TIA a couple of days ago. Still assessing the extent of the damage, but it may push him into Stage 7. 

Your DH's clinginess is relatively common to dementia in it's earlier stages (i.e. Stage 4). He probably still has enough awareness to realize that something is very wrong, but doesn't understand just what. He's probably confused a lot of time as to time, place, and familiarity with his surroundings. You, OTOH seem to know just what to do and where to go when he doesn't. Consequently, you are his safety net and it scares the dickens out of him if you're out of sight. His behavior is called "shadowing" and it can, absolutely, wear a caregiver out. I'm grateful that my DH didn't shadow me. His most troublesome behavior has been anxiety, angry rants, culminating in aggression or verbal threats. Medication has helped to tamp it down, but not eliminate, the problem.

As far as your stress and depression over the loss of independence and derailed plans for a future after retirement, I can only say, you are not alone. I don't think there's a single person here who hasn't deeply felt the losses caused by dementia. And, the soul-crushing grief of losing the person we love as they become a stranger to us. Some of us feel resentment. Some decline into resignation and depression over the hopeless, helpless state of our lives in this moment. Therapists, grief counselors, chaplains, family, friends and support groups like this can ease our distress. Don't overlook the value of medication, if nothing else works. I never thought I'd be taking an anti-depressant, yet here I am...and so are you. Let's hold each other up.

Buggsroo

Retired Teacher,

Firstly, welcome to the forum, it is a club no one wants to be a member, but here we are.

It can be quite overwhelming dealing with the symptoms of Alzheimer’s and you are accurate when you say we have it. I hope you have family and friends with whom you can stay in touch, you need support to deal with what is ahead. I also hope you have all your legal ducks in a row, there are some very experienced people on this forum who can advise you better than myself.

I am sure others will chime in and welcome you.

Scooterr

   Greetings and salutation, Retired Teacher, Buggsroo is right, "no one wants to be in this club," but here we are.

  This forum is awesome to have as a resource a lot of knowledgeable folks. I've gotten more sound advise from this forum then any doctor my DW has seen. If your looking for advise or just need to unload your troubles, this is it.

   My DW is a retired teacher also, anyway welcome. 

Ed1937

Hi Teach. Welcome to the forum. Sorry you have reason to be here. But this is a great place to learn, and to teach others with your experiences. You will get understanding here that is hard to find elsewhere. So if there is anything on your mind, don't be afraid to post with it. You can ask questions, answer questions, or just rant. It's all good, and we're all in it together.

If you haven't yet seen a CELA (certified elder law attorney), it's time to make the appointment. This is something you don't want to put off.

KathyF1

Hello Teacher, I am fairly new to the forum as well. I am sorry you are going through this. My DH is in a similar place, he also shadows me and I completely understand how frustrating that is. You never have a minute to yourself. Such a test of your patience! And it’s depressing to know this doesn’t get better. I try to keep in touch with friends and family, it’s important to have normal conversations!  I hope you get a sense of support from this forum, I know I have.

Joydean

Hi Teacher and welcome, sorry you are here. I get the loss of your independence. My DH also follows me every where. Some days if I turn around too quickly I will bump into him. He’s waiting outside the bathroom door! But it is what it is and we just do the best we can.

Crushed

Hi Teacher   I'm a retired professor and teachers are the best . We get your output  We know how hard you worked.   I posted this in another thread . Ill repeat it so you know my story .

I miss the life we worked for all our lives
 
DW was a brilliant government physician and a hard working professional. I was a Professor by 40.  We worked  HARD.  We raised our children together and supported one another in every possible way.  She was incredible.   Her work was was so vital that her agency waived  all caps on her annual leave  so it could accumulate.  In 2009 she was appointed to the top position in her field in her agency.  I was by then an Emeritus professor and the future was golden  DD#1 was in a PhD Program DD#2 in law school. 
She actually took all of her annual leave that year  
In 2010 she was diagnosed MCI and it all came crashing down.  She was 58
There would be no "golden years"  We crammed in as many  good times as we could as the disease destroyed her brain.   October 2017 she went into Memory care She was 65.  She will be 70 next week 


 For all practical purposes I could not leave  DW alone from 2012.  She came to every class till I stopped teaching.  I was doing some very interesting consulting to the government and she came to every meeting. As long as she was with me she was quiet and happy
By 2014 I had given up all professional activity.

you wrote I love him and am supportive but am really struggling losing my independence.
 
I found I redefined independence  I figured out the things I could do while taking her with me.   She went with me to meetings in Vienna and Scotland.  
By 2017 she was wandering and psychotic (mirror self misidentification)   In October 2017 she went into memory care

Every case is different but that is our story   
 

Marie58

Welcome to the forum, Retired Teacher. You found a great place to learn, ask questions, share your experiences, or just vent. Sorry you have a need to be here. 

I'm a retired teacher as well. I retired early too (age 60) 4 years ago, but to care for DH full-time, not to travel. He is only 2 years older than I am and he also retired when he was 60 as he could no longer do his job. He's late stage 7 and in MC now. We never experienced any of our retirement dreams.

When he was home, DH would sometimes shadow me but was very quiet about it. Sometimes I'd turn around and he'd be standing there and startle me since I wasn't expecting it. I'd actually give anything to go back to those days.....

Blessings to you and DH.

DrinaJGB

So sorry you have to be here, but you will find a lot of support for this journey.

My DH started out with a brain injury in 2010 from a near fatal bout of viral encephalitis leaving him with impaired memory and executive functioning, and personality changes.

.It has largely been a path of twists and turns with a lot of unknowns due to the rarity of his disease (1: 1 million)---so how many docs have ever seen a case much less treated one? There is only one unit in the US for this type of encephalitis at Johns Hopkins.

Lots of testing and a more recent MRI along with yet more neuropsycholgical testing again revealed the diagnosis of mixed dementia--possibly AD/Vascular. MRI had a lot of white matter hyper-intensities, but so did the initial MRI in 2010 after he nearly died due to a delay in correct diagnosis as well as much-needed acyclovir administration which lead to a nearly fatal outcome.

He was bowel and.bladder incontinent 12 years ago and still struggles with that, although it has greatly improved recently---ironically after the dire mixed dementia diagnosis.So, I am left after a dozen years still scratching my head about the diagnosis part.

  His neurologist tried him on Aricept only to have to take him off due to rapid weight loss, nocturia and bed-wetting every night -(-which he had not done in years), and hyper secretions and coughing which we feared would lead to aspiration. He is now on nothing. His memory since then is still in the ok range. He actually surprises me still when he exhibits short term memory recall.

So it seems we are still left groping in the dark with this mixed dementia diagnosis.I know exactly how you feel and hope you are able to sift through the maze of this confusing and often frustrating and most unfortunate diagnosis.

  Best of luck, and know that you are not alone in this struggle.

Sligo177

Hi there Retired Teacher,

Yes, welcome, we are very sympathetic to your situation.  Retirement should be a relaxing time....I'm going through the same steps and am maybe 2 years into it.  Reading through this forum, I've gotten some good ideas about how to navigate through the days and nights.  And just knowing others care and are having similar problems helps.  Also, I echo what others have said, if you haven't yet, do see a certified elder law attorney.  You have to think ahead for your sake as well as your DH.  

I often go off to the other bedroom when DH is up at night in the bathroom several times, I don't know if that's an option for you but it provides me with more rest.