Dementia and Covid

I think we all know that this experience will change how we live, work and play. For many of us that work primarily with older adults, we are seeing how some of the changes may make growing older better for all of us. I look forward to these changes with hope, even though right now, things are more challenging to manage as we adapt to physical distancing.

In the past two weeks, my neighbors and I have all realized that a couple living on our street is in dire need of support. The woman has been knocking on my neighbors door (she is a doctor) at all hours of the day asking for her to check her heartbeat. There has been an EMT visit (the man fell down the stairs), and someone also called the police.

The reality is that none of us can help someone who doesn’t want or recognize they need help. There have been calls to their son who at least helped them set up support from a home care service. There is only so much you can do for your parents who believe they are fine and decline help. The son lives states away.

Yesterday, the home care assistant didn’t know when the woman left the home. When my neighbor took her back home, the home care assistant yelled at her about leaving.

For those of us who are caring or have cared for someone with dementia, we recognize that while they may not remember a conversation, they do seem to hold onto emotions. I am guessing it won’t be long before my neighbors insist the home care assistant gets fired. Who wants someone coming into their home and yelling at them?

We are in a difficult time and many of those performing the duties of home care are not paid well and are putting their lives at risk. However, we also need to find ways to ensure the person in our loved ones homes are trained to help them and I’m afraid that some families are not getting the right support.

So what can you do if your family is in this situation?

  1. Randomly call your loved ones and even have them just leave the call with the line open* so you can hear what is going on in the home and how your loved one(s) are being treated … and how they are responding. If you hear something of concern, reach out to the home care agency and ask for them to address it with the caregiver. I cycled through a variety of individuals before we found the right fit for my mom.
  2. Contact an Aging Life Care Manager. These professionals are trained to help find the right care and be the onsite advocate if you are unable to travel to your loved one. They are not inexpensive, but when it comes to the service and support, I have found they are worth every penny.
  3. Move your loved ones in with you, or move in with your loved ones. There are a few families that have made this choice because they felt it was the best decision for them. This can be a huge hardship and commitment.

    Just know you will make the best decision you can with the information you have. Be at peace with the difficult choices you are and will be faced with. Your loved ones are lucky to have someone in their life watching over them when they need it. Reassured.

*Your loved one doesn’t understand your request? You could ask them to put down the phone and go get something, like an Aunt’s address or phone number because you want to send them a note. Be creative.

Moving into a Care Community that Matches Your Current Need

The move discussion is difficult for many couples and families. I did a three-part series on the topic to help provide a quick overview into some of the key learnings I have discovered. Here are the first two:
1) The Angsty Discussion About Moving: Life Care Communities
2) Moving Choices: Aging in Place – Part 2 of 3
and today is a final consideration on planning.

I do recommend you consider hiring a local Aging Life Care Manager to help navigate these choices and the current community options near you or your loved ones. I worked with one to help with my Mom and have seen them help with this discussion and process over and over with many clients.

The One Client Story That Illustrates How This Can Work

I started to work with Marge when she was living in her home. She had missed some bills, overpaid others, and was giving out her credit card number over the phone to charities daily.

After a year, it was time that she moved into an Assisted Living Community because living at home was just no longer a safe choice at 89. The new community was a combination of Assisted Living and Memory Care residents. She initially moved into an Assisted Living apartment but after about a month would wake up in the middle of the night and wander the halls in her nightgown worrying and sometimes tried to leave. They moved her into the Memory Care community so she would have more support and she would be in a secure section of the building. However it was hard for her to get integrated into a group of women and eventually she managed to actually break out. The community was just no longer a good fit so the Aging Life Care Managers searched for a better fit.

In addition to not really finding companionship with other residents, Marge had to pay for additional personal care assistance. Her monhtly community fees with the extra staff support now rang in at over $20,000 a month.

Six months ago she moved into a residential setting. She lives in a home with 5 other women with moderate stages of dementia and it’s a great fit for her needs. While this was not the right place for her initially, it is right now given how her dementia has progressed and the type of personal care that is best for her.

There is an Aging Life Care Manager who has been helping the family along the way, and while everyone thought the first community move was a great choice – and it was a great fit for a while – eventually it just wasn’t the right place for her needs.

Now at 93, we hope that she has made her last move. However, considering a move to a better fit is still an option and if she ever needed Skilled Nursing care. Her new community is now a third of the cost and she has found a loving group of residents and caregivers that are helping her find some happiness daily. It is the ideal fit for her right now.

I’m in the metro-DC area and we now of dozens of choices. I’m amazed at how many communities are still arriving.

Please know that you will make the best choice you can with the information you have at the time you need to make a decision. It will be easy to look in the rearview mirror and second guess choices made. I hope this has given you some insight into how to look at living options if you have loved ones living with dementia. Hoped.