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Looking for personal stories of diagnosed persons living with joy
iowagirl1961
Posted: Tuesday, June 29, 2021 5:26 PM
Joined: 6/29/2021
Posts: 1


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
Posted: Tuesday, June 29, 2021 6:28 PM
Joined: 12/4/2011
Posts: 20094


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.
Posted: Tuesday, June 29, 2021 8:00 PM
Joined: 12/15/2011
Posts: 17430


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.


alz+
Posted: Thursday, July 1, 2021 12:28 PM
Joined: 9/12/2013
Posts: 3608


I had to shed a marriage, my beloved home, and friends to be moved closer to my children so the first years were pretty hard.

because I use CBD oil - which I discovered a few years after diagnosis - I have been able to live pretty well. My vision became narrow so I had to give up driving, my reaction times was too long to be safe. I walk, do yoga and swim in summer. I like being alone but wish I did not have to manage food.

I was prescribed Zoloft and Ativan in 2013 and used it successfully until I got out here where doctor refuses to prescribe. I had insomnia for years which is over now that I use THC oil at night. I smoke cannabis for meltdowns (ends in minutes). Anything with natural world involved gives me joy and peace.

I rarely hear on boards from anyone using cannabis medicines but my local dispensary keeps a list of people who use CBD for medical reasons and what works. Pretty much everyone benefits, zero unintended side effects, clarity within 10 minutes of sublingual dose. Costs me about $40/month.

Animals, walks, yoga, rock hunting, and now gardening give me great peace and happiness.

****

I still have anxiety build up which lowers my immune system and have used Ativan to stop cascade of anger or fear that would last for days and resulted in either a UTI or Shingles. If anxiety got out of control, certain strains of cannabis ends it in minutes. I figured out what triggers fear and had to find what helped me.

Find what works and relax into it. My daughter read up on "handling alz" and stopped asking me ANY questions. We have benefitted from this tremendously.

all the best


laughing
Posted: Thursday, July 8, 2021 6:10 PM
Joined: 9/2/2017
Posts: 12


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
Posted: Thursday, July 8, 2021 6:12 PM
Joined: 9/2/2017
Posts: 12


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.