Looking back, what advice or tips would you give yourself

MizRuby

Hello-

A friend and I are stepping in to become caregivers for mutual elderly friend. She has no children or any family.

She just received the basic dementia diagnosis, and we await more testing for stage and kind.  After doing lots of reading I’m guessing early with touches mid stage Alzheimers. 

We will be getting all the legal stuff done ASAP. POA, Advanced directive etc.We have discussed all her future wants and wishes.   We can access to all her finances and are watching and guiding. We are decluttering her apartment and eliminating safety hazards.  We have discussed her driving and will discuss when it’s unsafe  

What would wish you had known early in the process?  Discussions? Safety? Etc. 

-Thank you 

Ruby

RanchersWife

For her sake, make sure you’re compensated fairly. I firmly believe that the person doing the care should be paid a salary or inherit what is left.

harshedbuzz

Ruby-

This is a difficult situation. Since you don't live with your DF, you aren't getting the 24/7 view that a spouse or adult child might and may not be seeing sundowning or nighttime shenanigans that would allow you to advocate with a physician in terms of determining stage.

To that end, I would try to have her driving professionally evaluated by a specially trained OT. As a potential POA, you could have some issues if she has an accident with a dementia diagnosis. 

HB

Cynbar

My advice to myself would be don't wait too long at ever step along the way. When you're starting to wonder about driving or living alone, it's probably time to make changes. Looking back, I think I waited too long to end my DH's driving and to stop leaving him alone. Nothing bad happened, but it could have. Regarding the driving, I stopped it after he drove me home from a minor procedure ---- I always drove when we were together, and I had no idea it had gotten that bad. The above poster is right, you don't know what is really going on if you're not there 24/7. As she gets into the mid stages, she won't be able to live alone safely, so now is the time to work towards a plan. Gear it towards her worst days/moments, not her best. For almost all of us, our LOs are worse than we think they are. I just didn't see it clearly at the time.

MN Chickadee

Read Understanding the Dementia Experience (a pdf online) and the book The 36 Hour Day. These will help get you ready for what is to come and how to do it as best as possible. My advice would be to read up on what is to come and be ready. Don't stick your head in the sand just because it's hard or scary or not what you want to happen. The decline is inevitable, and we best serve our loved ones when we are ready for it. That gives them the best care and quality of life instead of scrambling.  Face it with eyes wide open and be ready. Have a plan in place for each phase - needing some care, needing full time care, evaluate and be on waitlists at facilities early. Have a home health agency chosen in case you need it suddenly, have a skilled nursing facility chosen in case, be on the list at a couple memory care facilities. I would second that you need to be there 24/7 for a while to truly know where she is at. I would come for a visit and stay a few days to get the lay of the land. 

Have a frank discussion with the other caregiver friend. At some point this is likely to become very, very hard. Emotionally hard for sure, physically hard is likely. Exhausting. The typical stuff is tiring, and that's not even counting the random and inevitable medical emergencies as dementia starts to affect more than just memory and thinking, it becomes a whole body disease. Sudden crisis are pretty common. You will likely have to give up a lot to care for this person unless you move her to a care facility very early. I would want to have some ground rules and understanding with the caregiver friend so that it doesn't ruin your friendship, ruin either of your marriages if you are married, and doesn't ruin your own health. You need to be on the same page for expectations and plans. 

EJ97

Hello MizRuby. It is really nice that you and your friend are helping the PWD. You said regarding her finances you are "watching and guiding." You might want to take over her finances. If a lot of money goes missing, you may not be able to get that back. My mom wrote a check to the trash company for $600 when the bill was $40. She took out $5000 from her checking after I had written checks for her bills which would not have cleared if I had not gotten the cash from her and immediately deposited it back into her account. Submit a fraud alert on her credit report. You might want to have cameras installed so you can see if there is behavior that might be a danger to her. I tried the life alert button/necklace but mom never wore it. If this lady is on medication, you will need to monitor that. There are a lot of medication dispense devices out there. Stove and microwave can be a hazard. Ex: metal in the microwave or burners left on.

mommyandme (m&m)

My first thought,  after how lucky she is to have friends like you, is how compatible will you and your friend be together as this gets more difficult. Does one of you have the POA or do you share that burden?  Lots of moving parts and staying aware at every curve will be imperative. 

I just hope your friendship isn’t tested to the limit.  Both your boundaries should be well laid out and understood.  

So so hard… that’s my mantra for the day or month or year or life.  

NylaBlue

Definitely don’t doubt or question your instincts. My DH would have been diagnosed years earlier had I insisted on a neurology referral. He would have stopped driving earlier had I not been so concerned with “upsetting” him. His family would have had more “good” time with him had I ignored DH’s demand to tell no one about the diagnosis. As I learned, this disease is all about upsetting people: the PWD, relatives, friends and ourselves, the caregivers. We all want one more day, week, month, year of perceived normalcy, but it’s our job to see the changes and keep our LO safe.

And as m&m said, how wonderful to have friends like you. When dementia enters the picture, many of us find we have no friends at all.

Ginsamae

Ruby - Hi and welcome to the party no one wants to attend.

In my contacts with APS and our local Area on Aging here are some items you might need to address to keep from facing possible legal/financial issues down the road:

Since she is still living on her own and you and another friend have POA - you will need to protect yourself in the event your DF is worse off than you realize. We were advised to disable the stove and install cameras in the public spaces of my MIL's apartment and to have someone come in to her apartment at least once a day to check to make sure that MIL was taking care of herself and the apartment. To not do these things might have made DH and I criminally liable in the event MIL got hurt or set fire to the apartment - because we knew she had dementia. We ultimately chose to move MIL in with us...but that is a completely different story.

Also, I don't know what your DFs financial situation is but if you believe that long-term Medicaid may be needed down the road, PLEASE get her finances under control NOW. Medicaid has a look-back period which could cause major headaches down the road - especially if your DF still has the ability to write checks and use a debit or credit card to order online. We are faced with a potential denial of Medicaid because MIL refuses to allow anyone on her accounts and has ordered thousands of $$ worth of gifts and written hundreds of $$ in checks as gifts to friends and family - a big no-no in the Medicaid approval process!

Also - to piggyback off of Ranchers response - if you and your friend plan to be compensated for helping your friend make sure to have a written agreement between yourselves and your DF. Otherwise any payments your DF makes to you could be considered by Medicaid as a 'gift' that must be repaid to qualify or would make her unable to qualify for Medicaid.