Caregiving resources for every stage of the disease.
RSS Feed Print
Losing Reality
Mac50
Posted: Friday, February 17, 2017 10:46 AM
Joined: 10/1/2015
Posts: 392


My DH is losing touch with reality.  
 
I mostly just go along with his reality.   If the girls were over today and he spent time with them that is all good. 
 If some girl came over and gave him a shower and told him he looked nice - okay. (Of course that was me).  

There are always others doing things  ..... and I honestly believe in his reality this is true 

He thinks one of his CG is in love with him and maybe he should go with her..... I tell him that he should stay with me.  And he agrees because I am nice too. 

I am so worn out.   Emotionally  At 53 I can't see the future.  

I wish I could see a future with a career or any light - something  I know Crush always says we shouldn't expect to live as before but I am tired of worrying about everything from money - our son- the house- my future- his future- the dog ( yes, sometimes I consider giving the dog away) just to take something off my plate.  I got the from to add Medicare part B yesterday.  sh-- another thing.. that is all I  could think of was sh-- sh-- sh-- another decision.

The company I work for is being sold ... sh-- sh-- sh-- 

Thanks for listening  

SUN Please do not respond..... I don't need your negativity 

 


Laurention
Posted: Friday, February 17, 2017 12:11 PM
Joined: 11/4/2014
Posts: 180


Mac...I'm going to assume your DW is EOAD ? My DW was 55 at DX (I can trace it back to about 2 years before that) She lost pretty well all connections to reality summer of 2015.

We always made our decisions together. As she started to lose touch, more, and more, decisions became mine to make alone. I struggled for quite sometime being the sole decision maker. Always worried i would make the wrong one.

My only advice to you is to weigh your options, make your call, and move on to the next one. I won't tell you it was easy...Nothing about being a caregiver to a loved one with this horrible disease is "easy".  Just do what you think is right.

My heart goes out to you.

   Mike 


BillBRNC
Posted: Friday, February 17, 2017 12:34 PM
Joined: 12/2/2015
Posts: 791


And don't mess up your mind seconding guessing done decisions. All you can do it the best that you can do, What happens after that isn't yours to torture over.
Michael Ellenbogen
Posted: Friday, February 17, 2017 12:55 PM
Joined: 11/30/2011
Posts: 1688


I agree with Bill, we took many many year to learn to do things and some of you are getting thrown into it under fire and that is just not fair. You make the best decision you can with what you know. Don’t be afraid to ask a trusted recourses because they are invaluable. Even in my good days I used one. 


jfkoc
Posted: Friday, February 17, 2017 1:17 PM
Joined: 12/4/2011
Posts: 11677


Mac...you are doing a bang up job. There just is a lot of responsibility associated with this illness. It can be overwhelming...days when you want to run away. 

You have a really great on this reality thing. Hopefully, and for the most part, you will be able to continue to join your husband's reality. Rarely was my view of it important and often my husband's version was more interesting.

I found it helpful to write down everything that needed to be done in three columns. One for absolute, two for pretty important and the third for optional.

House stuff was somewhere between important and option and yes, I did end up with deferred maintenance but I am comfortable with that. Cleaning...someone came in twice a month and that was clean enough. Meals...I learned to cook for leftovers, to use a crockpot and to accept a sandwich as dinner.

A dog? A dog was not my idea and if it were my idea it would not have been one that weighed 85 lbs. Luke was a good support for my husband and now he is my company. I hope your dog is not the first thing to go.

Always remember that if/when you smack up against something like Plan B ther is someone here not only to listen but who knows about Plan B, VA, SS etc.

 

 

 


Alzwell
Posted: Friday, February 17, 2017 2:47 PM
Joined: 3/1/2015
Posts: 2035


I agree you are doing great. I'm sorry you're overwhelmed right now. I remember being there with all the decisions. 

About insurance:  I was of the opinion that I would arrange to keep insurance from his employer which he had through his short and long-term disability stints. It was pretty good insurance. But when I checked on what would happen to keep it, I found the premiums would be higher and benefits lower. I also checked with AARP, who has a wealth of info available in a friendly no-pressure phone call. I never have spoken to anyone there with a foreign accent, believe it or not!  Anyway, they don't sell insurance, but do give very helpful advice. It was helpful to understand that with Medicare B there is a window of time to sign up without penalty. If you wait too long, that penalty every month never goes away.  And there are several supplemental plans available so it was helpful to hear them carefully explain what each plan covers and the cost of each one.  I have been very pleased with the plan we have (plan F). We rarely pay any out of pocket medical expense.  They will also walk you through the costs and options of part D for drug benefits. 

You may already have known all of this but I didn't. I had a good friend who told me about it.

Good Luck 

Dana


Mike&Brenda
Posted: Friday, February 17, 2017 3:04 PM
Joined: 5/9/2016
Posts: 355


Mac50 wrote:
the dog ( yes, sometimes I consider giving the dog away) just to take something off my plate.  I got the form to add Medicare part B yesterday.  another decision.

 I want to give the dog away every day.  It's a 12-yr-old poodle who has forgotten how to ask outside, how to come when called, and everything useful. Do dogs get AD?

As far as Medicare Part B, I found that to be quite useful, at this point worth far more than it costs.

Mike



mrsbob
Posted: Friday, February 17, 2017 3:53 PM
Joined: 2/9/2017
Posts: 6


Yes Mike, dogs do get AD,  I had one.  He would get in a corner and not know how to get out.  Plus many other problems.  But one of our dogs now has been a life saver to Bob.  Not sure how things would be without him.

 mac50, Bob did everything except pay bills.  That was my job.  I had to learn everything from scratch.  Still learning,  I even had to put in a garbage disposal myself.  Find experts that you can trust.  Our investment banker is wonderful  He talks me through everything.  Our docs have been great helps in putting me in touch with the folks I need to consult.

It is such a scary journey.

By the way, I am new.  I have been on this journey almost 5 years.  I'm scared, lonely and frustrated.  We have no family close by ( or at least ones that care) so I am IT.

Carole

 


Ricki07
Posted: Saturday, February 18, 2017 7:15 AM
Joined: 2/4/2017
Posts: 90


Welcome Carole.  My situation is similar,  tho my DH has MCI, and may stay at this level for awhile, I am thinking of what lies ahead.  There's no family left and if there were, I doubt they'd help.  The future is scary...I am trying to gain as much knowledge as possible....."hope for the best....prepare for the worst"  I am so thankful that I found this group.  I learn something new every day.

One of our dogs had dementia.  At night, she stood and shook....didn't appear to know who we were.  During the day, she was better.  

In many areas, there's a group of retired professionals called  "The Umbrella", which is part of the  local senior services.  There is a fee to join, but they will  work for  perhaps half ( or less) than "working"   repairman.  The idea is to help seniors stay in their home longer.  They don't do "major" jobs, but it can save money for minor/annoying repairs that can add up.

I will be seeing my attorney in a few weeks.....also will be looking into the local Alz. caregiver support group, for local support ( hopefully)  Maybe that would help feel less lonely.  

  Ricki


mrsbob
Posted: Sunday, February 19, 2017 1:59 PM
Joined: 2/9/2017
Posts: 6


Hi Ricki,

I have everything in order as he was diagnosed 4 1/2 years ago.  I had to learn everything.  It took time but I am well on my way.

I fix and do what I can and then if it's not to big a job I will ask one of the men at church.  If it is a biggie then I hire it to be done.

My biggest thing is I am so lonely, and tired of having to do it all myself.  Most of our friends have passed or have enough problems of their own.  With no family it is hard as I'm sure you know.  There are grandkids close by but they have completely abandoned us.

 

The thing that really gets me is his sarcasm, nasty mouth and on occasion physical aggression. This coming Wed. he will be seeing a Geriatric psychiatrist for the first time.  Our doc wants to know if his aggression is because of the Alzheimer's or maybe something mental.

 

Sad to have to admit, my Bob is gone.

Carole


Ricki07
Posted: Sunday, February 19, 2017 5:11 PM
Joined: 2/4/2017
Posts: 90


Hi Carole...

I'm glad that you have everything together.  I have always handled the finances, insurance, etc., but I'm really scared of what lies ahead that I can't handle...and if my  own health will hold up.

As with you, we have lost most of our friends....some live out of state.  The few local friends we have left are kind, but have their own issues.

I'll contact Alz Assoc. in a few weeks about their support group....see how that goes.

I'm sorry that you have to deal with his sarcasm, etc....perhaps after Wed., he'll be given new meds. and that will change.   Please be careful with his  physical aggression.

Ricki

 


Mike&Brenda
Posted: Tuesday, February 21, 2017 5:34 PM
Joined: 5/9/2016
Posts: 355


Re: Dogs with AD:

Wikipedia says the "AD-like" disease in dogs is "Canine Cognitive Disorder," and it mimics AD in humans.  Symptoms are:

  • Disorientation – loss of ability to navigate the house or remember where specific places are (i.e. furniture, corners of rooms)
  • Interaction changes – decreased interest in social interaction (i.e. petting, grooming, playing)
  • Sleep/wake cycle Changes – restlessness throughout the night, sleeping during the day
  • Housebreaking issues – defecating indoors, not signaling to go outside
  • Physical activity level – decreased interest in being outside, decreased responses to stimuli (e.g. sounds around home, people)

My little 12-year-old poodle exhibits all of these, and also just stands and shakes a lot, another symptom mentioned.  I guess I'm her caregiver, too.


TayB4
Posted: Tuesday, February 21, 2017 6:40 PM
Joined: 8/8/2014
Posts: 593


Mac50,

I just wanted to say that I think you are doing a wonderful job as a caregiver to your husband. I wanted to give you my online support. 


Mac50
Posted: Tuesday, February 21, 2017 8:53 PM
Joined: 10/1/2015
Posts: 392


Thanks everyone for your support. 

It is just some days I feel overwhelmed.  And of course I miss someone to share decisions with but mostly I miss planning and looking forward to tomorrow

As CP I think that is the hardest part ---?the future.  Especially for the YOAD group.

 


Mike&Brenda
Posted: Monday, February 27, 2017 1:47 PM
Joined: 5/9/2016
Posts: 355


Mac50,

It's been about a week since we had to put our dog down (as noted in another thread). I miss the dog, but this week is the first week in almost 4 years that I was able to get some real sleep.  No more dog to wake me in the middle of the night, every night.  And not having to feed and care for the dog is a great load off me, given all the other things involved in caring for my wife.  If you are thinking about "giving the dog away to get something off your plate," I suggest you should think about it seriously and not as a joke.  It's amazing what having the dog off my plate has done for my physical and mental health.

And Brenda still hasn't noticed the dog is gone.

Mike


Callie in Boston
Posted: Monday, February 27, 2017 3:56 PM
Joined: 12/15/2011
Posts: 276


We just put a dog down in the fall who had canine dementia.  There is no treatment and the dogs can be terrified - ours was awful between 5 - 9pm and was difficult to calm.  I felt sad, but he was so unhappy.
 
× Close Menu