My amazing parents, John & Pat Barr.
When you want the best for your parents (or other loved ones in decline), it’s a hard decision to put them in a nursing home and let others care for them. In my case, we had my father in a wonderful nursing home that was even managed by a trusted family friend. The staff was wonderful, but when you asked my dad what he’s doing, he would respond in some form of “just waiting to die”. For him, it wasn’t home and never would be. The staff was wonderful and loved my dad, but they just weren’t family and his access to the Internet was very limited, which is how he loved to spend his days. Check out the news, check on his Cardinals baseball, and play solitaire all while having his fire scanner blaring out runs of all natures. Something accepted in our house (since he was a Fire Chief for over 20 years), but not well-liked in the nursing home especially at 1am.
During a flu outbreak, I tried to visit him because he seemed very down, but visitors weren’t allowed. It was a hard pill to swallow for me, even though I fully understood the reasons. It was that day, I decided it was time to bring him home… whatever it took.
The hard part was realizing, I have a full-time job, how can this work? This is the part where you have to ask for help. Many regions have a “Council of Aging” or some variation on a name like that. In Evansville, we were blessed to have the Southwestern Indiana Regional Council on Aging (SWIRCA). They were able to help us find what help my parents qualified for, which ended up being more than I had ever dreamed. Turns out, the Government and medical professionals want people to be home if they can be also. They found programs that included an aid to stay with my parents during the weekdays, along with a nurse that would visit to check on his health. If we needed evenings or weekends, yes, that did cost out of pocket, but for the most part, it was affordable. SWIRCA was also able to help guide us through all the paperwork and to know all the hurdles we needed to jump. They made what could have been 100’s of very frustrating hours of research and failures, into about an hour meeting every 3-months. As my dad needed more help, they found ways. As my mom started to decline, they helped find new ways to help. It was great, my parents were with family and happy… my kids enjoyed their talks, playing games, watching movies, which made something that could have been very hard, into a joyous life. But again, it was possible thanks to the amazing people at SWIRCA! If you get the chance, make sure to help me keep saying thanks by making a donation which is easily done from their website at https://swirca.org
For us, the easy part was remodeling the walk-in basement and making it wheelchair accessible along with a new bathroom that we could easily transfer him. You have to look through all the widths to make sure they can navigate (with or without a wheelchair). If using a walker, are there things to get caught on, where they could then fall? Get in a wheelchair or use the walker yourself, then navigate the areas they will be in and find what has to change. The things they can do on their own, make it accessible. You want them to do as much for themselves as they safely can. It’s important to not support their decline, but make it safely achievable goals. If they have to reach up to an extreme or stretch to reach something, it will be a danger.
While getting wheelchairs, hospital beds, and maybe even a Hoyer lift is something their doctor can help get in place, there are a lot of other things that I highly recommend, such as a Pulse Oximeter. It is a very handy tool to quickly tell their heart rate and the oxygen level in their blood. If Oxygen drops believe 90, it’s time to call the doctor.
As for blood pressure cuffs, I kept buying cheap and easy ones from Walmart but kept finding them very inaccurate. Once I switched to an Omron, the consistency of the reading went up dramatically and it was worth the extra money.
I found my parents started having problems working a cell phone and with their landline phone, they kept dialing random numbers, trying to remember my phone number. That even led to an accidental call to 911 for a dropped TV remote. So I found some great phones from VTech that allow you to put a picture in 4 buttons and all they have to do is push the picture of the person they want to call. Or they also have a pendant that it just takes one button press to call you.
One of the hardest parts is knowing that your loved one has taken their medications properly. Especially during pain management, missing a dose can send your loved one on a roller coaster of being in pain and then to get it back in control, they want to take an extra one. It’s hard to do, especially when the nap ended up being longer than they expected and to no fault of their own, missed it. It’s time to turn to the automated medication machines!
While Amazon sells a number of Pill Dispensers that beep (Like these), we opted for a monitored device service from Philips. While it looks expensive, our doctor was able to write a prescription for the device and it was covered 100%. The device could be set for their medication times and would give a nice, “Time to take your medication” verbal alert. It would keep repeating every couple of minutes at an increasing volume until they pressed the red button on the front of the machine. Once they do, the medication drops out in a plastic cup and it’s ready to take. However, after 15 minutes, if they don’t get their medication, the service will call the home. If no contact, they start calling the emergency contact and letting them know your mom/dad missed taking their medication.
The system not only made me feel better, but also my mother, who occasionally did have a hard time remembering if she had taken her meds or not. Now, she knew for sure and the read-out on the front would tell her how long until her next dose.
One thing I wanted to say is if your family member gets prescribed a medication that is expensive… talk with your doctor. Many times we found instead of paying $100’s, the doctor would say “oh, yeah, this other drug does the same thing” and that one was $10. Yes, sometimes, they have to take the expensive stuff, but it’s worth talking to the doctor about the cost because they know the drugs well, but not the cost at the drugstore, or what your insurance covers and doesn’t.
Another great service that SWIRCA provided was part of the Meals on Wheels program. Daily delivered meals at lunch time. So it was one less thing to worry about, a nice warm lunch was going to be there for them. While they ask for “donations” from the people they deliver to, it’s not required. Help when you can. So for those reading this, I hope if you are looking for a place to make a donation, keep this amazing program in mind.
Agencies have been popping up around the country that have Nurse Practitioners come to your home for medical appointments. In my parents’ case, they were even able to draw blood and have chest x-rays done at the home. With my dad being confined to a wheelchair, his NP noticed we were fighting blisters from the standard wheelchair and made an appointment to have a custom chair built for him. It alleviated all the pressure points and made him much more comfortable along with giving us a better way to get him in the chair as his strength declined. While not all doctors office visits could be eliminated, it reduced them greatly. And again, that was tremendous weight lifted off our shoulders as caregivers.
Transportation can be a challenge when trying to get family with limited mobility to a doctor appointment. We found getting a wheelchair service was unreliable time-wise and costly. We found that a wheelchair van sales location, also rented vans for a day(s) at a time, or what we needed, just got a couple of hours at an affordable rate. If you travel with them enough, buying might be the best option. But in our case, we used our local dealer of Superior Van and Mobility and found it worked out very well. We will forever be grateful to them for the amazing kindness and affordable solution.
While you are doing a great thing in taking care of a loved one, expect them to get tired of seeing your face, haha. It took a lot of planning to make sure their friends visited every so often. Make sure you help plan it because that interaction greatly improve their frustration in the situation they are in. While you are doing everything for them, don’t forget, they miss talking to others and need that. When you have to get them out, don’t take the direct route home, show them the new things around town or drive by their favorite places and get some food, or ice cream.
A good friend had an AMAZING idea, interview his parents on camera. He set up a camera with them all on the couch and talked about their lives. He got them to share the stories he’d heard many times but got them documented forever for the family. As I watched his video, I had tears in my eyes, because I would have done anything to go back in time and have gotten those stories recorded in their voice, with their facial expressions and laughs. I could not recommend more, to get those stories in a video and store them in a very safe place.
One thing that saves us a LOT of money on supplies, was getting a membership at Sam’s Club. Disposable bed sheets, disposable underwear, OTC medication, and medical gloves are dramatically cheaper and easily paid for the yearly membership fee. Don’t forget to keep track of those expenses, because in certain cases, they can be tax-deductible.
One thing that saved my sanity, was making a supply shelf. I had two of everything, one open and one unopened. As soon as I had to open the new package, it went on the list and was replaced. All those things, toilet paper, wipes, disposable health products, and all those things you CAN’T run out of when taking care of your loved one. It allowed me to always get supplies at my leisure, without the fear of running out.
While I spent a lot of time taking care of my parents, when I met my future wife, she jumped in feet first to help. My son, my daughter, my new wife, it was a tag-team of help with lots of love. Yes, there were frustrating days as their strength faded… but now that they have passed on to a better place, I am so thankful for the time we had with them. I can not thank my wife, Jessica Barr, enough for her hard work, dedication and love for my parents. She was amazing. As her parents need a little more help, we are ready. They still do well on their own, but with a monthly visit from their Nurse Practitioner, a weekly grocery run by their granddaughter and we are all on call if they need anything at all, we’ll come running. I’m proud of our decision to take care of our parents ourselves, but also, it was a lot of work, pulling on a lot of resources to help. Not everyone can do it, and that is ok. But if you are wanting to do this for your loved one, just know, you will never be alone. The resources are out there to help and I hope that me sharing our experience helped a little too.
Let me say, if you are thinking of taking care of a loved one instead of sending them to a nursing home, I want to be your friend! Even if you can’t pull it off, I’m inspired by people that want to take on such a challenge.
Finally… If this was helpful, let me know. If you have other suggestions for me to add here, PLEASE let me know that also. I want to do anything to help others who want to do this and to let them know, they are never alone.