When mom fell and was diagnosed with dementia four years ago we knew the time had come to move her from Illinois to Oklahoma. We didn’t have a whole lot of lead time - we had known we would have to make decisions somewhere down the line but mom’s injury and diagnosis put us in the express lane. Not only was working between two states a nightmare; in addition, I had no idea what I was doing. I got lucky and found a wonderful place for her - she and I are very happy with our decision but there are so many things I wish I would have known.
For those of you who have found themselves in a caregiving situation or are just getting started and exploring what options are available, I thought I’d share what I and others I’ve spoken with have learned along the way.
First, I thought I’d gather up a few websites:
A good place to start is your local Area Agency on Aging. From their homepage you can choose your state and gain access to:
Available services in your area
Mobility assistance programs, meal plans & housing
Assistance in gaining access to services
Individual counseling, support groups, and caregiver training
Respite care
Supplemental services, on a limited basis
AARP's Caregiving Basics is also a great place to start and you don’t have to be a member to access the information. They point out a number of important tips such as: don’t sign on the day of your visit, bring home brochures and pricing so that you can go over the information with other family members, and consider reviewing the contract with your financial advisor and attorney. There’s also a link to local resources and solutions - all you have to do is enter your zip code. Also included in the site is a Legal Checklist for Caregivers which can help you make sure you’ve got the important things covered.
Another helpful site, Samada, was recently brought to my attention. It’s easy to navigate as well as being an additional source to explore your options. There’s a page for care and housing options as well as an extremely helpful guide that explains the different ways to pay for long-term care including Medicare, Medicaid, Health Savings Accounts, and long-term care insurance to name a few. In the "money" section there’s an article that explains how to spend down assets to qualify for Medicaid along with helpful links throughout.
Now, here’s a little first (and second) hand experience:
Once you’ve gotten a preliminary handle on things, then this is where the collective wisdom of others comes in handy. Why reinvent the wheel when you don’t have to? Those of us in this situation know what it feels like and we have loved and appreciated any guidance given to us. For that very reason, we happily pass along what we’ve learned.
If you’ve already decided on assisted living, memory care, or an independent living facility what are some of the things you should look for? One of the most important sources of information for me was the residents themselves - do they look happy, are they clean, are they engaged? Does the staff treat them warmly and with kindness? Is there an aide or a staff member within your line of sight? Also, how are you received by the director or the person who is to show you around and explain pricing, care, etc.? You may be their 1000th potential client but, for you, this is your first time, it’s stressful, you have questions - lots of them - and you should be treated with compassion and respect. As my friend commented about one of her visits to a retirement community, “if you aren’t listening to me I can assume you won’t be listening to her.” Exactly.
Make note of the general cleanliness of the facility, not just the model apartment or room they show you. Visit the restrooms, peek into a resident’s room if you can, and ask to see the kitchen. Not that you need to be reminded, but notice the smell. Accidents happen and that’s understandable but there should not be a pervasive smell of urine throughout the facility.
Once you’ve chosen and moved your mom/dad/spouse in, visit often and at different times of the day. Get to know the staff - they are your direct line to how your loved one is getting along - whether it’s what they’re eating; their sleeping habits; or, as in my case, how much they wander around in the middle of the night. It should go without saying but it’s worth a reminder: treat the staff with kindness and appreciation and learn their names - they have a tough job and the ones who stick it out and stay year after year are a special kind of awesome.
Introduce yourself to your parent’s friends within the facility - mom has several that look out for her and I love them for that. They make sure she’s in the dining room for meals, save her a place at bingo, and let her know when they see me walking down the hall. I really appreciate that last one - mom is given the heads up on who I am and I can skip telling her who I am. Another great benefit to getting to know their friends is you’ll gain a few more “grandparent” figures. I say “grandparent” because they’re always thrilled to see you, generous with hugs and compliments, and they’re concerned if your hands are cold. I’ve been offered blankets, sweaters, and gloves so many times - it’s so dear that they want to take care of me. No one can ever have too much of that.
A friend from Departure From Logic's Facebook group was gracious enough to share a few more tips: visit with the family members of the residents, eat a meal there, and join a local caregiver support group. Other than the obvious, a support group will provide you with a wealth of information - all the brochures and guided tours in the world won’t give you the insight that the people who are the recipients of the facility’s services will.
In addition, she had a few more ideas to keep in mind which I’ve summarised here:
Once you’ve narrowed down your search for a facility, if possible, have your parent participate in the decision. Also, you’ll want to keep the future in mind when choosing. If assisted living isn’t too far down the road, perhaps that’s where you should start - moving is difficult and stressful and can exacerbate certain health problems. *Melissa here - as a side note, the place that I chose for my mom has independent living, assisted living, memory care, and skilled nursing and, except for independent living, she’s used them all. Being able to maintain an ongoing relationship with the staff made it so much easier for her and me.
Be sure you know the procedure the facility uses to get your parent cared for if a medical issue arises. Do they call 911 first, or you? Are they going to put her in an ambulance and send her alone to the ER? This is important to know because many of our parents or loved ones are not able to navigate the ER by themselves and they need someone who knows them well to provide information, interpret their needs, and reassure them.
A question worth asking is under what circumstances might your parent be asked to leave? Dementia and Alzheimer’s affects everyone’s behavior a little differently and certain medical conditions can make taking care of your parent more difficult - what level of care requires more attention than the facility is equipped to provide?
Ensure you have everything in writing and take notes during meetings and discussions. It’s easy to forget small details, especially if the information is foreign to you; also, don’t be afraid to ask questions, be direct, and follow up.
Being an advocate for someone you love is a tough job and an important one. It’s hard to even know what questions to ask when something is so new and often emotionally charged - hopefully, this will give you a place to start and a little peace in knowing you aren’t alone.
“By three methods we may learn wisdom: First, by reflection, which is noblest; Second, by imitation, which is easiest; and third by experience, which is the bitterest.” - Confucius