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LO diagnosed at 54
Posted: Friday, August 16, 2019 12:06 PM
Joined: 8/16/2019
Posts: 15

My mother was recently diagnosed with Alz, a month ago, but it has been a struggle to get to this point. 

She was diagnosed with psuedodementia ( depression that looks like dementia) a year ago, but she wasn't depressed and the doctors at the time kept thinking there was nothing it was a result of a UTI. 

Now that we have the diagnosis, along with severe brain atrophy, I am just at times struggling to help her cope and adjust. 

Lately she is thinking that she screwed up or didn't feed the kids (mind you me and my husband dont have any kids), or that her parents are coming to pick her up (they live in AZ, havent been able to visit yet), sometimes she get agitated and upset because she once used to hold three jobs and now she cant do anything almost. 

She lives with me and my husband (who is a god send, especially through all this) in a two bedroom apt with three cats. I wanted to reach out here and see if anyone has any advice or words of wisdom. 

Thank you!

Posted: Wednesday, August 21, 2019 5:10 PM
Joined: 5/28/2018
Posts: 8

My mother had Alzheimer’s and passed away at 68 yrs old. Now my husband has it. Was diagnosed a year ago, after about 5 years of struggling. He was almost 57 when diagnosed, but looking  back, I believe he’s had symptoms for the last 6 yrs. Having a parent with it vs a spouse are two different challenges from the same disease. If you want to chat sometime, get in touch. I’d appreciate bouncing ideas around and helping each other through struggles. It won’t be a fun journey, but I believe it can still be rewarding and beautiful. It’s our life, too! Might as well make it as good as we can!
Posted: Saturday, August 24, 2019 3:52 PM
Joined: 9/12/2013
Posts: 3560

Shorts and Swim -

I wish I was having a better day to respond to you both, but appreciate how thoughtful you both are about taking care of a person with dementia.

Want you to know I went from being "difficult" moody and what people called "depressed" to having fun when I was relieved of responsibilities and in a super easy environment. I treat the agitation with CBD oil, and now am living with an ex husband who is father of our kids. I live with a fenced yard and a dog door so I don't have to worry what my dog is doing, I have my own bedroom and some things shipped from my own house which is now for sale. Youtube helps me when I have insomnia, road is low traffic so I can walk most days. Kitchen simple, I don't drive, we laugh a lot now that we got used to what works, what doesn't.

I think having an online friend is a great idea - and sometimes things get so bad they are funny, great to have someone who will laugh with you.

My advice is to imagine a situation where the person you are minding would be pretty much at peace with things. The elementary stuff. Something to do, a walk, friendly animals, a room of one's own, art of any kind, music, cleaning, etc or visiting places where the person is comfortable and mingle like museums, galleries, thrift shops, whatever. Projects like painting furniture, window cleaning, repairing things, helping others do stuff...A great bed, feeding birds in winter gave me a reason to face the cold and pleasure watching them. 

Even if it is impossible to make it happen, imagining things set up for the person to feel relaxed about confusion will make it all a lot easier.

My garden just went from 3 potted plants to 8. Most people wouldn't know it is a garden. I love the plants I collected to revive. I used to go rock hunting on back roads where I lived, photographed wild flowers, clouds, neighbors' dogs.

wish you the best.

love and courage


Posted: Saturday, August 24, 2019 8:21 PM
Joined: 8/24/2019
Posts: 1

I was recently diagnosed with early onset Alzheimer’s in December 2018 at 57 years old. My mother and uncle also had it. Is there anyone on this board who currently has Alzheimers and is not a caregiver?  I currently have a great ALZ doc, and am familiar with the resources on this site, and will be starting a support group, but. I was wondering if anyone can suggest anything else.

I have modified my diet and eat pretty healthy, exercise and am trying to stay active. Any suggestions you have is greatly appreciated. I live in Southwest Florida. Thanks.

Posted: Sunday, August 25, 2019 6:34 PM
Joined: 9/12/2013
Posts: 3560

KBone - this particular board is for people with younger onset dementia, the people who posted above were (I think) asking people who have dementia for tips, even though they were experienced with other family members having it.

My grandmother and my Dad had it and now I do.  

What I found helped me was environment (which took me years to achieve because my husband at the time did not want to help with much) and CBD oil. Not hemp oil but the real thing from a dispensary. It enabled me to function again, like a restart, it didn't erase the problems in function, but it was life changing. It clears my head, I can recall numbers and do some math, walk to a store, use a credit card things I can not do without it.

My daughter moved me to her dad's house (my first husband) and I battled to make this my ideal easy place to live out my days. A room of my own, things simple, colors that help, a fenced yard, a doggie door, and memory foam bed, etc.

I found things I COULD do, like rock hunting, collecting autumn leaves, puttering. Some days I can sew, and I feel very happy often - my frustration came across as angry depressed person but I knew inside I could coast through this with just a little help, that "little help" was surprisingly difficult to get. My tenacity was seen as further need to make me be sedated or medicated, I would say "just help me have less responsibilities! take over the money sh*t! Stop demanding I be what I used to be!"

On rough days I add THC oil to the CBD. I also smoke cannabis whenever I feel edgy or overwhelmed and get instant relief. I enjoy time with dog, sometimes I am absorbed totally in cleaning something, it is an ALZ thing for me, becoming absorbed in small things.

I also found I can learn stuff, figure out a new vacuum, assemble furniture that came in a box, etc. I can not drive because of slow reactions and vision changes - when that happened and I was homebound 4 years ago, that was when I discovered rock hunting on walks with my dogs. I would photograph stuff and edit pictures. 

My Dad would sit at his desk for hours a day or on back porch and look off across a pond. He wasn't having an awful day every day, he liked my dogs to sit by him, he loved when I made special food or took him to a restaurant he knew.

Other people figure out different ways to handle stuff. I believe when we know what the fundamental environment needs are, and establish them with a routine it isn't so bad. Many illnesses are awful, I don't have the terror about the illness many people do, it is just a condition. I tried hospice palliative care and found the nurse who came to house was worse than no one coming.

Other people will share what they do or you might find lots of ideas in other posts.

Glad you are here Kbone and hope you share your story of how you figure this out for yourself because that has potential to help 1000 others. Friends here!

love and courage

Posted: Sunday, August 25, 2019 11:33 PM
Joined: 8/12/2019
Posts: 37

Does your mother and your uncle had early onset Alzheimer’s or late onset? Because in some family’s when there are several persons in you family affected by late onset Alzheimer’s the cause probably isn’t a mutation in one of the three genes.
Posted: Monday, September 23, 2019 6:46 PM
Joined: 2/10/2016
Posts: 47

Hi Swimchick0425,

My mom was also diagnosed with Alz at the age of 54. She's now 58 and is still *relatively* healthy; I can still have conversations with her, but EVERYTHING is HARD--she needs help with literally EVERYTHING. The progression of this disease is awful and it's a horrible thing to go through, but you will get stronger over time. I can finally talk about it without breaking down and having nightmares about it. Eventually you'll learn what to expect and how to navigate it for a while until you see/experience new symptoms, then you re-adjust and learn what to do next. It will become your new "normal".

I'm in a similar position as you because my husband and I are living with my parents in a very small house. My personal advice is to do your very best to take care of YOURSELF FIRST. It's way too easy to get burnt out, exhausted, frustrated, and take things out on your loved ones--I did this today. Always put your health/needs first so that you can be the best caregiver to your mom.

I'm so sorry for you and your family. Hang in there♥