Can only hear about my dad's dementia from 2300 miles away

Puppyluv2020!

Hello,

I live in Atlanta, GA and my dad and mom are in Southern California.  That's always gonna be home for me and my husband, but we relocated to the Southeast about 15 years ago to make a fresh start.

My 89-year old dad has dementia.  They call it "vascular dementia".  I receive all information about my dad and his cognitive state from my brother and sister.  They do not mince words.  It is so hard to hear about my dad wandering, getting lost, getting confused, at times being paranoid and occasionally hallucinating.  Meanwhile, my mom is in almost total denial about my dad.  I keep hearing about my dad having delusional thinking, and that my mom just yells at him if he is "talking crazy".  

Today, I talked with my sister who told me that when she saw our dad yesterday, he said that "the woman in my bedroom this morning told me Elizabeth was dead."  Granted, this was just after he got up that he says these things.  When he "sundowns", the delusional thinking starts up again.  When he is sleepy or early in the morning, he mixes me and my mom up.  When I went to see my dad and mom a few months back, I am pretty sure my sister and brother wanted me to visit them so that I could see for myself what my dad is like.  It ebbed and flowed with him during that visit.   When I first got there, my dad answered the door at their senior facility.  I thought to myself, "well it can't be that bad if he's able to answer his own door and recognize me", but within 15 minutes, my dad was saying that he and I were approximately five years apart in age.  This is the whole "mixing me and my mom up" thing.

I guess I'm just reaching out for a little bit of support.  It's hard being the adult child of a parent with dementia anyhow, but being the adult child of a parent with dementia when there we are on separate coasts is particularly sucky.

Thanks for reading.

Elizabeth

jordansfca

How do you want to be involved? If you want to be more involved, would you be able to take time off and go spend time with your mother and father?

Unless you are able/willing to go relocate you are limited with what you can do and will have to rely on your siblings to get updates.

Good luck.

Puppyluv2020!

I will have to make do living where we are at and visit with them when I am able to do so.

Emily 123

Well, hard as it is, you must be a great listener, or they wouldn't be sharing with you. It's hard to see your loved one fade away in person.  Though tough on you, it's a really good thing that they can vent to you.  I think if you can continue to reach out to them and give them support and someone to talk to, that's a great gift.  It is hard having to be so far away, and with this disease it never gets better.

crgriffin

I am in a similar situation. My sister, who is three years younger than me, was diagnosed at age 64 with early onset Alzheimer’s. I’m on the west coast and she’s in Kentucky. I haven’t visited her this year, but I flew back twice last year because our mom had terminal cancer and died in April 2021. My sis sometimes remembers where I live and sometimes she thinks I’ve moved in with our youngest sister, who also lives back there. I keep in touch with our youngest sister, and with our brother in law, who is bearing the burden as well as a spouse can in such a difficult situation. The one thing I do every couple of months is to text my brother in law to ask if it’s a good time to call my sis with dementia. If he says yes, I call and talk with her for 15-20 minutes. Since she and I are the oldest siblings, we have shared memories from our childhood and so far, she’s been able to pull up those old times with my encouragement. I’m able to get her laughing about things we did as kids that she still remembers and it seems to make her happy to remember those times. It won’t be long until she loses those older memories, too, but for now, it keeps us connected the only way we can during a pandemic. I don’t know if your mom is able to recall long ago memories, but if she can, try to steer the conversation in that direction.

King Boo

I am sorry to hear about the distance.  It adds a unique element to your loss.

It would be a wonderful thing for you to offer to take on a responsibility that could help your siblings.   Perhaps reviewing medical bills and claims to be sure they were processed through insurance correctly, keeping a spreadsheet of annual medical expenses.   This would relieve this chore from your siblings who have to do the face to face care.   Your sibling with POA may even be OK setting up a checking account specifically to pay medical bills from.

Or, perhaps researching by phone area Memory Care facilities and skilled nursing homes, to narrow down their search if they need care, or finding a facility that does respite care for a few weeks when they need a break.

Whatever you do, it will be appreciated.

harshedbuzz

Puppyluv2020! wrote:

I guess I'm just reaching out for a little bit of support.  It's hard being the adult child of a parent with dementia anyhow, but being the adult child of a parent with dementia when there we are on separate coasts is particularly sucky.

Elizabeth

Having experienced my dad's dementia both long distance and up-close-and-personal (once I moved my folks closer to me- I'm an only), I will say it is not easy either way. There are challenges to both scenarios. They both suck. I found having them at a distance was more anxiety provoking as mom was in denial, I wasn't getting reliable information from either and almost died with dad as her advocate. Having them closer was more work and more stress-inducing as the pair of them took over my life for a couple of years.

I think it's important to figure out what you want your role to be. Will it be limited by circumstances to a few visits and phone calls? Perhaps supporting others is the best approach- being non-judgmental ear on the phone would be a gift. IME, well-meaning suggestions (I saw your post about supplements) to those doing the heavy lifting or in denial are seldom appreciated. It might be helpful for those who are caregiving to have you spell them so they can get a break for vacations and respite at some point as dad's disease progresses. This time might be a good time to look into your employer's policies around FMLA. Before my dad became ill, I used to travel twice yearly to care for my MIL who lived with BIL and SIL so they could vacation with their children. Circling back to suggestions, I once suggested to BIL (MD) and SIL (RN) that maybe MIL should have some PT and let me just say I got my head bitten off. They believed MIL would pass within 6 months; DH and I didn't- MIL lived 6 years beyond my suggestion and I was right about the PT. But in the interest of family harmony, I kept silent going forward. 

I'm a little curious why you put vascular dementia in quotation marks. It's a real diagnosis apart from Alzheimer's although sometimes it is co-occurring. There are similarities to Alzheimer's but often the disease progression comes more in a series of steep drops in cognition/skills followed by periods where there's a plateau. The course of VD tends to be shorter than ALZ. I had two aunts with VD at the same time my dad had mixed dementia. The older sister was diagnosed, broke a hip and died within a period of less than 2 years; her younger sister was formally diagnosed about 12 years before she died but we suspect her late husband knew she had MCI/VD and didn't share that with family. 

I am sorry you and your family are going through this. 

HB 

Puppyluv2020!

Hello,

I totally agree with you.

My dad (the one with dementia) served as a reservist in the US Army back in the 1950s and never looked into whether he might be eligible for VA benefits.  It turns out that this may be an untapped resource for them, so I've actually started this process.

Whether or not I'll be able to get benefits into both my parents' hands or possibly just a surviving parent, but I am really excited that this may be  resource for them.

Elizabeth