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Our LO was diagnosed mixed dementia several years ago. We did what we could to keep him home as long as possible safely, at least what he would allow. He was placed in Memory care a little over a year ago because of decline and the professionals deciding he could not live alone any longer. We were not willing to sign him out ama due to neglect concerns and multiple assessments deemed he only qualified for memory care. He's done well there for the most part, other than being very angry he couldn't go home and blaming us which is a whole other story. He is nearly 4 hours from us because we live at the beach and there are no memory care centers in our immediate area and we have demanding lives ourselves. He also wanted to stay in his hometown where he lived his whole life, and being much more urban it provides WAY better medical care options than our little beach town. The thing is being so far away we have a hard time getting updates and info from the center. Only about 1/4 of contact attempts are replied to at all. Email or phone. We'd like an update every week on his medical well-being and any needs but we feel like pests, so we do every 10 days or so, and maybe here from them once a month. He does get someone in the family looking in on him about once a week and we do pop in if we are in town to get eyes on, but that can cause issues too if he sees us because he gets very angry and agitated because he thinks we put him "in jail" so usually we try to be discrete as the last thing he needs is another stroke/heart attack. Are our requests for updates as the POA/Med proxy unreasonable? If they are what is fair to ask, and if not, how do we get them to work with us? He is getting good care and it is a good place and he has a great PCP that comes right to the center for regular visits but communication is lacking despite promises before he went in to keep us updated.

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Physical proximity to dad's Memory Care Assisted Living facility has no bearing on communication that takes place via email or phone. You should be able to conduct such communication from Europe while he's in the USA, even!

The key is to get a care plan in place with the Executive director and nurse that you'll speak on the phone once a month at X time and date. Then you can discuss dad's situation, your concerns moving forward, his needs, etc. That's what I did with my mom in Memory Care even during the covid lockdowns when I wasn't allowed entry inside the bldg.

While our goal is never to be pests to the staff, we DO have the right as well as the obligation to our parent to be their advocate and the voice they've lost to dementia. If the staff has an issue with that, too bad....thats my take on things. I was always first to compliment them for going above and beyond for mom, and to bring treats for them to share, but I was also vocal about concerns I had that I felt needed to be addressed. It's a fine line we walk, I know, to get heard AND not be looked at as pains in the butt. There's a way to do it though, I believe, where you'll feel comfy in the long run. Keep their feet to the fire in terms of expecting a monthly care conference, number 1.

Number 2, don't feel the need to rush over to visit a lot if dad will get agitated at the sight of you. They're often doing just fine until WE show up, and then the acting out begins in earnest. I would call over to the MC to find out how mom was REALLY doing on any given day rather than ask her myself bc she'd tell me she was dying and being starved when the opposite was true. She lived to over 95 w/o me giving her a heart attack from a visit!

Wishing you the best of luck with a difficult situation.
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I don't think its unreasonable to keep u updated. Usually though, care meetings are done every 90 days. Maybe u need to talk directly to the Administrator telling them u have requested updates via email with no responses. Ask if your request is unusual? What criteria is in place for families to be made aware of what is going on. Portals are very popular now, maybe they do them, same with his Dr. Don't accuse. Just ask.
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Another thing you can do is to send treats to the Care Givers. Since you can’t be there on the ground, maybe via Amazon, or even door-dash, or Instacart.

Attach a note that says from whom and why these treats are being delivered to them.

Then, when your Boots On The Ground person visits, he/she can ask the CAREGIVERS how your LO is doing. Caregivers know the residents’ challenges better than anyone in administration.

Since I am only about 2 miles from my mother’s facility, and bring treats and notes to the Caregivers about once a month. They know my name, and I know theirs.

Also, if caregivers are treated well, chances are better that they will take better care of your LO. It’s just human nature.
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Missymiss May 2023
Exactly what my friend who is an Elder Care Attorney told me. Be nice to the caregivers and they will be nice to your LO and talk freely to you.
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MickiLyn: Perchance you can find out what his care plan is at the Memory Care facility, which should include a summary of reports to his loved ones.
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Speak to the administrator.
Tell him/her what your needs are and ask if they can accommodate / meet those needs? If s/he says "yes," tell them that you call and only hear back around 1/4 of the time - why?

You are paying to be 'a pest,' although you are not being a pest.
You ARE paying for this service.

Pay someone who lives closer to the facility to check in on him as regularly as you want. I do this work for my client as her son / family live out of state. I am the liaison for the family and work directly w the staff, medical needs personnel, etc. AND I PROVIDE WRITTEN REPORTS (or depending on need, calls or text or emails) REGULARLY TO THE FAMILY.

* When I visit my client, I always talk to the Memory Care manager and care providers (aides on the floor).

You don't need this level of management, you need someone to check in on a weekly basis - a 'visit' to see how things are going. You want a care manager or someone who can do this. You want / need more than a caregiver.

Gena / Touch Matters
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