need help with guilt

joytoy

I am taking care of a boyfriend with VD  I am getting better with handling problems that pop up due to alot of reading about dementia.  Problem im having is when i read about stages i reconize many of the symptoms of each stage my boyfriend is going thru now or has gone thru already.  Its like he goes from stage 3 to stage 5 back to stage 2 then up to stage 6.  hes all over the board.  the doc said he was in moderate stage whatever that means. I guess it bothers me because to be honest i want to know how long i have to do this. Feel guilty about that but its the truth  I want this over.

Chammer

I have seen the saying on this board "If you've seen one person with dementia, you've seen one person with dementia" meaning there really aren't any patterns or rules that PWD follow - they are all setting their own individual course and trailblazing ahead on their own path!

DrinaJGB

Do the best you can. The guilt goes in the trash can. You will never make any sense of it. Best of luck to you.

loveskitties

Here is a web site which tries to estimate duration of the disease by stage.  I say "tries" as each person is different and has different other conditions which may impact life expectancy.

Take it for what its worth.

https://www.dementiacarecentral.com/aboutdementia/life-expectancy-calculator/

Crushed

joytoy wrote:

I am taking care of a boyfriend with VD .........

 

 

Didn't you watch the movies in health class?        

(my mother had Vascular  dementia and she made the same joke )

 

No guilt non none whatever

 

EVER

 

The stages were originally developed for health care planning
My wife has been in stage 7 for over 3 three years.    MCI 11 years ago  She is 69

 

 My mother had vascular dementia  for 11 years   She died at 89 


  

 

 

 

Quilting brings calm

Vascular dementia is rumored to be shorter in duration than some of the other forms of dementia.  Most likely because a stroke can be what they pass away from rather than the ravages of dementia.  They say the average duration is about 5 years after diagnosis.  However, you will see on this and the caregiver board  that a lot of families have been caregiving for over a decade.   Try to figure out what his typical behaviors are on an average or bad day day, and use that to try to match him with a stage.

Cynbar

• Joy, I think many caregivers share your frustration and want to know how long the dementia journey will be. One poster even joked that she kept looking for an "expiration date" on her LO so she'd know how long she'd need to care for her. Unfortunately, there are averages but disease progression varies widely and there is no way to predict how long your boyfriend will be around. Also, not everyone goes to the final stage, some people die of another cause like a stroke or pneumonia. The simplest and truest answer is that you will do it until you can't. Many (although not all) dementia patients do eventually need placement, either the caregiver becomes totally exhausted or safety issues like wandering come up. You should start now to think of a Plan B, in case it all becomes too much for you. You two should meet with a certified elder law attorney, if you haven't already, to make sure legal documents are in place. And you need to have a clear idea about his finances --- does he have the funds for care or would he need to apply for Medicaid? The attorney can help you straighten all that out. The best approach is to hope for an easy journey but plan for everything.

ElaineD

Here's the link from loveskitties:

https://www.dementiacarecentral.com/aboutdementia/life-expectancy-calculator/

I love kitties, too!

ElaineD

DrinaJGB

My FIL had vascular dementia for about  years before he went on hospice care at home and passed in his bed. I believe the final diagnosis became mixed dementia.

  I hope his relatives are helpful as well as compassionate. If not you will have some struggles in that department---especially if there is any sort of estate.

  I hate to say this but my in laws took advantage of my DH's vulnerability and became predatory. I ended up having to hire a lawyer in the midst of all the illness confusion and expense. Ten years later and we are still in litigation. It has been a long and very expensive road. Be forewarned. At the time they pulled their little shenanigans we had been married for 30 years, so it wasn't as if I was a newcomer on the scene.

  If you are not legally married to him you could have a fight on your hands, so if they are not exactly sympathetic folks you may need to watch your back. The ideal scenario would be that his relatives would be supportive and kind, but that sadly is not the case in every situation. Good luck.

DrinaJGB

Meant to say 5 years FIL had VD. Sorry.

Iris L.

Vascular dementia's abbreviation is VaD.

Iris

DrinaJGB

So, if your abbreviation for vascular dementia is VaD---perhaps it should be changed on your commonly used abbreviations glossary on the Alzconnected webpage.