What should a community include for a person with Dementia?

checklistMy hope is to make this a simple checklist – but don’t discount that this is such a personal and complex topic. My Mom is currently in an Assisted Living facility that is geared toward someone who needs help with the Activities of Daily Living (ADLs). The residents include individuals in wheelchairs, some with vision-loss, and others who have mild cognitive impairment.

The needs of someone who has partial vision loss is very different from someone who has no idea what day it is. For a variety of reasons, we began a search for other living options for my Mom.

On my tour of the first community, I marvel at the communal dining arrangement. My Mom has difficultly making choices and I realize that having to sit alone and then choose a meal is a dis-incentive to visit the dining hall. I understand why my Mom has been choosing to eat most of her meals in her room and makes her own peanut butter and jelly sandwiches.

My Mom has also started to ask me what she should be doing. She has always been in motion and not knowing what to do to stay busy is difficult for her. Most communities that deal with individuals with dementia offer very structured days with activities that can fit a range of individuals in varied stages.

When looking at a community, I recommend you:

1) Check out the activity schedule. See how the day is structured and attend some of the events to see how they work. Having something to do and being invited would be very helpful for my Mom. All of the offered activities are also geared toward someone with memory loss.

2) Understand the meal service. The first facility I visited explained the family style meal service. They make the delivery of the food feel very home-style and tailor each meal to the residents medical needs and personal preferences — but do that on their behalf. All of the dementia-based care facilities offer this as well as monitor if the resident is eating and make adjustments for them because most are no longer able to make meal choices.

3) Consider other care needs. If a doctor is needed or skilled nursing required, what are your options? How do they manage end-of-life needs?

4) Talk to other families with loved ones in the facility. I visited three different places and only one of them offered me the ability to call the families of other residents. That speaks volumes!

5) Listen to your Gut. One of the facilities I toured was absolutely beautiful. I could picture my Mom in the apartment and we could furnish the whole place with her furniture. However, I realized that the facility with smaller rooms that come pre-furnished that we could tailor with my Mom’s belongings is probably the smarter choice. The idea is to have her engage with the other residents of the community and the smaller rooms encourage that behavior.

As a closing thought, I recall how difficult it was moving my parents from their independent living apartment into assisted living. We had about two weeks to pack, move, store and dispose of furniture, clothing … stuff!  While I don’t mean to be so grim, I know that my Mom is never going to get better and the less we have to sort through when she has passed away, the better I will be able to manage and deal with the final bout of grief that will come once my journey with my Mom has ended. Considered. 

Is my Mom in the right place?

retirementcommMy siblings and I have had a love/hate relationship with my parents retirement community.  I know that our journey would have been infinitely more difficult had our parents not made this choice. The fact that the community stepped in and forced them to move into Assisted Living saved us from having to petition the court for conservator/guardianship.

We’ve had a rocky road when it comes to our expectations of and the delivery of services. I have too many posts dedicated to this topic to detail, but currently, we are trying to determine if Assisted Living is the right place for my Mom who has dementia.

My Mom has been in Assisted Living for more than a year, and for quite some time, she was not very nice to the staff or even the other residents. My Dad helped manage this when he was alive, but after he died, it got even more difficult and we were told we had to bring in additional support and adjust medications or they would begin a 30-day discharge process. I’m simplifying the story here admittedly – there is a lot more that happened.

Assisted Living is not geared specifically toward someone with dementia. We started to notice that many of the staffers really don’t like my Mom and witnessed some situations that were disconcerting. We assumed the staff would be able to understand and accept her behavior and were trained to manage someone with dementia. However, even we recognize that sometimes things my Mom did felt very personal.

We have hired additional personal assistants daily from 1 to 9 PM for more than 3 months. My Mom has started to ask for a schedule and has episodes where she doesn’t recognize her apartment.

When we were told that my Mom might be discharged in 30-days, we started to look for other options. Because of my business, MemoryBanc, I meet many people in the senior community. I met two women a year ago that started a business to help families find the right living community. One of them has worked in management for retirement communities, the other is a registered nurse – both were caregivers to their parents and decided there was an unmet need to assist families in the search process and they launched Caring Considerations.  I hired them to help me find the right place for Mom – there are dozens in the metro-DC area. I also wanted some help to know what I should be looking for.  They helped me find several wonderful options and have helped me understand the disease process as well as what to look for in a community. .

I realized after the first tour, that a facility geared toward someone with dementia has many resources to better serve my Mom’s needs. Discovered.

This will be an ongoing topic as we move through this process …. more to come. 

The Two Stinky Options for Dementia Care Givers

marie marley
Marie Marley

I am thankful that my parents choose their retirement community. It alleviates most of the guilt I feel, however, it doesn’t mean you aren’t involved or acting as a care giver. Helping my parents has been and continues to be a part-time job. The community works with me and my siblings — we are actively involved as advocates and care givers — and have been for more than two years.

Right now my siblings and I are struggling to know if my Mom is in the right place. With dementia, the transitions are the trickiest and I’m not sure one community will always be the right place for everyone. The set-up of the Assisted Living community is proving to be very challenging now. We are possibly going to have to find her a new place if the place she selected confirms that they are just unable to help my Mom any longer.

I enjoyed reading this article in Huffington Post by Marie Marley who speaks to The Pros and Cons of Placing Your Loved One in a Facility.

It’s a good read, and a good reminder that both choices stink. Conflicted.

Getting my parents to lunch

supportMy parents are now in Assisted Living which has removed pounds of worry in regard to my parent’s safety. This was a difficult transition since my parents did not recognize it was needed for a variety of reasons. 

With this new stage, we have a new set of needs and issues to manage. Thankfully, we know they are in a community designed to support them, but it’s not perfect left to run by itself. Being involved and working with the staff is an important skill I’m working on developing. I’m working through how to identify and manage those needs while also respecting my parents need for independence and privacy.

The first two months were freeing, but I’ve recognized some gaps that need to be addressed … like making sure my parents are eating their meals. Their apartment doesn’t have an oven or even a microwave, so the community provides all three meals. I take my parents shopping weekly and I know they are going through two loaves of bread a week.

When I brought this to the attention of the staff, they confirmed that they stop by to let my parents know when meals are being served.  There are two meal halls, so making sure my parent’s eat each meal isn’t as easy as it sounds. When I ask, my mom tells me they have only paid for one meal, so they choose to eat a sandwich in their apartment. I’m losing the communication battle on this one. We have discussed how nice it is that the community provides all three meals since my mom has no interest in cooking, but the concept doesn’t stick.

I stopped by to discuss it with the director since the simple reminders aren’t working. She shared that the staff reports that my dad wants to eat, but my mom keeps pulling him out of the meal hall. We chat through some strategies on how to get them to eat in the meal hall. We discuss letting them know of an empty table by the window that is reserved just for them as well as having the floor staff rephrase the announcement of lunch being served into an invitation to have a free lunch.

I’m glad I have trained staff in place that can help us figure this out. Supported.