Looking for personal stories of diagnosed persons living with joy

iowagirl1961

We received my husband's AD diagnosis in December after a previous MCI diagnosis.  The neuropsychologist that did the testing was very helpful and gave us his best estimate timeline saying we should not see significant decline for the next two years.  I want to make the most of whatever time we have; we are financially secure and both retired.  Much of the time, recently, my husband is unable to focus on all the positive things we have.  We are scheduled to meet with a psychiatrist in a few weeks for help.  I am hoping to find personal stories of people with AD that have been able to live with some amount of joy and also people who have lived well beyond the years that a doctor gave them.  Does anyone have experiences they could share?

jfkoc

Well we bought a house in Santa Fe. Traveled  where and when my husband wanted to. Watched war movies over and over. Pretty much just did what he wanted to.

I would forget about focusing. It is one of the first things to go. I question the benefit of a psychiatrist but it is not at all uncommon for a PWD to take something like Zoloft.

Iris L.

iowagirl1961 wrote:

.  The neuropsychologist that did the testing was very helpful and gave us his best estimate timeline saying we should not see significant decline for the next two years.  

Each PWD (person with dementia) progresses at his own rate.  "When you've seen on person with dementia you've seen one person with dementia." This is a motto of the Alzheimer's Association.  IMO, it is misleading to offer reassurances that cannot be guaranteed.

I want to make the most of whatever time we have; we are financially secure and both retired.  

Do make the most of whatever time you have.  There are many threads on the Spouse/Partner board about travel and bucket list type activities.  But educate yourself more first.  Alzheimer's Disease is not like other chronic illnesses such as heart disease or cancer. Caregiving requires a new perspective. 

 

Much of the time, recently, my husband is unable to focus on all the positive things we have.  

When I was told I had to accept that I had dementia I fell into a deep depression, lasting nine months.  My fellow patients, caregivers and Care Consultants got me through the deep depression.  At the time I was seeing a psychologist who was absolutely unhelpful.  IMO, only PEERS can help a person diagnosed with dementia.  Now, other people have had different experiences. 

Most people are ignorant of what it means to actually have dementia.  Thus everything they say is the wrong thing.  Be very careful who you choose to help.  You should be closely involved with the other spouses and even with a Care Consultant and possibly a local in-person support group before trusting a random psychologist, who may not be skilled in helping a person diagnosed with a with terminal illness.

Some local AA chapters have support groups for caregivers and for PWDs.  Now that Covid is resolving they may be starting back up in person.  Call the Heloline and ask about this.

We are scheduled to meet with a psychiatrist in a few weeks for help.   

See above.

I am hoping to find personal stories of people with AD that have been able to live with some amount of joy and also people who have lived well beyond the years that a doctor gave them.  Does anyone have experiences they could share?

I live with joy but that is because I make it my mission to live with joy.  I believe in God and His promises to me.  I do not have Alzheimer's Disease, although I have many serious chronic illnesses.  I believe developing a personal philosophy to address mortality is important.

Iris L.

laughing

My husband and I are retired as well and make the most of every moment by simply laughing. Playing board games (I forget the rules), having ice cream on the deck listening to Alexa jazz, go for drives (I don't know where we are sometimes). It is now the simple life when we were used to running ourselves ragged now we stop before we get tired. We have bought many cans of paint and just finished painting one feature wall in every room. Fun! Best wishes to you both.

laughing

I love Telemynd and my Psychiatrist who I meet via Zoom monthly and it helps to get the frustration out and have someone just listen. I hope it will help you as well.