New and Overwhelmed

SyndelFuego

Hello Everyone,

Early this month my Dad was finally properly diagnosed with ES after a prior diagnosis of MCI earlier this summer. Mom (73) is still active and has a sharp brain still, but this even has overwhelmed her. She is scared of having to put things on hold for herself just to take care of Dad. She find the Alz site hard to navigate and wont call the toll-free number to ask for help.

Dad is 77 and he repeats his thoughts or questions 3+ times within a few minutes and he cannot complete tasks that require many steps. He has taken taken the wrong medications at their designated times. Other times, I have found pills on the floor and he was completely unaware that it hadn't been taken and the pill was missing. He has had a lot of trouble using his cellular phone and often can't recall how to text or attach photos to a message. Earlier this spring dad and I went for a walk at a large mall near where we live, my dad drove and I came along and we went our separate ways to walk. When it was time to leave and meet at our agreed upon location, he was at the wrong location and couldn't recall where the car was parked. This sparked a discussion about his driving and we were advised to restrict night driving and his trips.

He doesn't have many social circles. His Neurologist has told him that he needs to be social and get out and talk to people. Mom and I have offered his several options (join a club at the senior center, church group for men, etc.) and yet he hasn't done anything. He was also told he needs to be doing activities to keep his brain sharp: physical puzzles, cross-words, sudoku, I even offered up Lumosity as an option for on his computer. He hasn't done anything his medical staff has told him, so I now an beginning to understand that his MCI has progressed further than I thought.

We could use some advice on finding out more about ES and the potential challenges we will likely face in the future. Mom especially wants to gain knowledge about what we can expect in terms of changes to his behaviors and way of thinking. Dealing with his forgetfulness is troublesome for her. She isn't the most patient person and when she calls him out for things he often gets upset and says, "Quit yelling at me." So there is some irritation involved in his ES. Dad is frustrated that he can't handle tasks anymore and he has voiced to me that he doesn't feel like part of the family. :'(

I, myself, am feeling sad and stressed. I am still living at home with them. Mom has told me that if/when I move out I'll need to stay close to home. It's left me feeling somewhat trapped. I am doing what I can, but I still work full time as I'm trying support myself and a college age son. I want to help mom to lessen her stress and worry, but finding a way to help in a way that permits me to work my required hours, and still giver her her freedom she needs for her own mental health has proven challenging. Perhaps I need to let my employer know about my Dad so when something arises where I need to step away they'll understand and be flexible in how I get my hours in, when an appointment or other event involving my dad comes about.

I'm fully open to hearing others' stories or advise on things we should be doing so our family can be supportive of each other.

Thanks!

Syndel

harshedbuzz

@SyndelFuego

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

I'm on my way out and don't have time for a proper post, but do want to share this essay with you that could help your mom become more empathetic and patient in her dealings with dad. My mom took a while to lose some of the anger she directed at dad for developing dementia and ruining her wonderful retirement flitting between the beach and Florida. This helped us both.

Understanding the Dementia Experience (smashwords.com)

And this talks about a typical/average disease progression. Not everyone will progress at the same rate or develop all of the impairments. My dad, for instance, lost the ability to swallow safely before he forgot his family or lost the ability to have wildly confabulated conversations with us. My dad was challenging with behaviors while my aunt remained polite and gracious until the very end.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

HB

PS What your dad's doctor is suggesting is "best practices". Dementia is about more than memory. Things like empathy, executive function, problem solving, the ability to learn and self-initiating are lost fairly early on. Your dad isn't going to put a plan in place to do these "recommendations" but I believe it probably wouldn't do anything to slow the disease progression or maintain skills. The brain isn't a muscle.

A day program might be a good way to get mom some breathing room, but if he's repeating on a 5 minute loop, folks who haven't had a cognitive shift aren't likely to engage with him at a non-dementia senior center.

Quilting brings calm

The book ‘The 36 Hour Day’ would be a good resource for your mom. Purchase the latest edition. She doesn’t have to read it cover to cover, she can read chapters as needed.

https://www.dementiacarecentral.com/

is a good website. There’s a subsection discussing stages of progression too.

I agree with everything HB said. doctors love to offer things like puzzles, socializing etc when the truth is nothing will help. So don’t worry about making him do it if he doesn’t want to.

He may very well be further along than MCI. Doctors don’t like to say dementia, so they will leap at the chance to downplay it as MCI. Especially if the person scores well on their 10 minute testing.

You need to tell your mom that you can’t put your life on hold for 10-15 years just because she wants you to. She probably thinks she can keep him at home long term since you will be there to help. What will probably happen is that you will have two elderly people to take care of and no life of your own - all while trying to maximum your earnings for your own future retirement. Consider moving out before long. Take her to a certified elder care lawyer to discuss all the legal documents she needs, their finances, and whether they will qualify for institutional Medicaid should he need to be moved into long term care.

Start researching independent living (IL), assisted living (AL) and memory care (MC) options so you will be ready later. There are places where they could be together at IL until he needs more help than she can provide - and then he could move to AL or MC and she could stay in IL. She would have a lot less to worry about in those environments because she’s not doing it all on her own.

Welcome to the forum

M1

Welcome to the forum. What you are seeing in your dads inability to initiate tasks and follow directions is the widespread effects that dementia has on the brain way beyond memory loss-he has apathy, and loss of executive function such that he can't follow through. He may be perfectly happy sitting and watching TV or doing nothing, and you and your mother need to let that be okay.

I totally agree that you should not put your life on hold to become your father's caretaker. Does your mother hold power of attorney for your dad? Who holds hers? You probably need to make an appointment with a certified elder law attorney (look at nelf.org) to look at legal and financial planning matters for both of them. This is necessary to figure out how you might finance institutional or in-home care for both of them if it becomes necessary.

He should not be driving, from what you are describing. This is a huge battle many times.

psg712

It is hard not to be irritated when you want him to reason and respond as he once could. He can't anymore, and that is sad. Socializing is really tough when he can't have a "normal" conversation.

Agree with all the recommendations for an attorney to establish legal and financial plans. Also agree that he should no longer drive. If he cannot do activities that require multiple steps, he is not safe to operate a vehicle.