We first realized there was a medical issue when Dad sent a birthday card to his youngest grandson signed, “Love, Uncle P” … What?!?!?!
Up until then, my siblings and I had only been worried about Mom and her memory lapses. Dad was her caregiver, driving her to her part-time job, various appointments, and social engagements. Now all of a sudden, Mom seemed like the healthy one!
When the diagnosis for Dad came back—Alzheimer’s disease—we were devastated. How could this have happened without us noticing?
Looking back, we see the clues. Dad was retreating from family life and spending even more time with his beloved books. He was rereading old favorites, instead of tackling new releases. And he was spending an increasing amount of time at the nearby barn, where he boarded two horses.
There was Zoe, the retired harness racer from New York, given to Dad by his Uncle Ed. And there was Sarge, the Morab he adopted at birth and trained for trail riding. Those horses became his best friends. They didn’t judge when he fumbled for words or had trouble completing simple tasks.
In the years leading up to diagnosis, my parents’ road trips to visit family became briefer and more infrequent because Dad always wanted to get back home to Zoe and Sarge. I would think, “Why doesn’t he want to spend more time with his grandkids.” It was almost as if he liked his horses more than us.
Mom would say things like, “This is our last trip to see you. From now on, you come see us.” And I would reply, “But Mom, you and Dad are retired, and we’re not.” Invariably, I would pressure them into driving back down to see us when the next holiday approached. And reluctantly, with much protest about traffic and road construction along the route, they would come visit, and then hit the road when church was over, sometimes not even staying for Sunday dinner.
In hindsight, it wasn’t so much the traffic and the road construction. They were concerned about losing their way home, even though they traveled with a Garmin. I now see the many subtle signs that Dad was slipping.
So with the benefit of deep personal experience, but no professional experience …
here are five steps I encourage you to take after a loved one is diagnosed with Alzheimer’s disease.
1. Make sure your loved one has a current picture IDIt can be a driver’s license, military ID, state ID, or passport; just make sure it’s current. Once my parents moved into a senior living community near me and no longer had any utility bills to show residency, it became difficult to obtain new IDs. Yet many doctor’s offices require a picture ID in order to be seen.
After an Alzheimer’s diagnosis, you will likely find yourself visiting a variety of new specialists, which in our case included a neurologist and a pain specialist (when Dad had a slipped disc). Both offices wanted a copy of a current picture ID on file. They weren’t interested in seeing the expired, out-of-state driver’s licenses my parents still carried, even though neither was driving anymore. Plus, we had a family cruise for 13 to the Bahamas coming up. Our parents needed new IDs if they were going to board the boat with all the grandkids!
2. Go visit a CPAIf your loved one has been diagnosed with Alzheimer’s disease, it’s time to gather up the most recent tax documents you can find, and go visit an accountant.
My parents were both educators who worked hard for their meager salaries. Dad preferred to keep his earnings and write one big check, once a year, whereupon there would be lots of swearing and gnashing of teeth about the damn government taking all his money. Okay, Dad, if that’s your ritual, then fine. Not my problem.
Trouble is, he always filed late, which as the years passed, became later and later. And by that, I mean sometimes a year or more late. So that one big check was an even bigger check once penalties and late fees were tacked on. This was a source of tension and argument between my parents for many years.
We were all relieved when he finally surrendered and allowed a local accountant to file on his and Mom’s behalf. Peace and harmony were restored at home for several years. It was a wonderful arrangement that would have continued had the accountant not passed away.
When I stepped in to help my parents following Dad’s diagnosis, it turned out that Dad had not filed any tax documents since the death of his accountant three years earlier. It had been beyond his ability as he struggled to keep up his daily routine of living with Alzheimer’s. Now his tax problem was my problem.
My husband and I performed an archaeological dig through my parents’ home office. We collected all the tax records we could find and turned them over to an accountant with a healthy heartbeat.
Thanks to the wonders of the internet, our new accountant was able to obtain missing documents and bring current my parents’ financial obligations to Uncle Sam. However, getting current did take some back and forth correspondence with the IRS, including a letter from Dad’s doctor stating he had been living with Alzheimer’s long before the official diagnosis.
Unfortunately, while the IRS waived penalties from the farthest year back of unpaid taxes, we were still on the hook for fees and late penalties for the successive years. Several five-figure checks to the federal government later and the problem was solved. Hallelujah!
3. Go visit a financial plannerThe archaeological dig through my Dad’s home office revealed my parents had a number of small investments that needed consolidating. We turned to our financial advisor for help. He recommended we go see a lawyer, specializing in estate planning, before moving forward with any consolidations.
He met us at the lawyer’s office and served as a partner in the process. Once a trust was established for my parents, he worked to fund the trust, consolidating the various pots of money under the umbrella of the new family trust.
4. Go visit a lawyerOur financial planner gave us a solid recommendation on an estate lawyer. His office turned out to be one-stop shopping for setting up both wills, powers of attorney, advanced health care directives and the trust, all in one meeting.
I’m not here to sell you on setting up a trust, because I know there are those who would argue that unless your last name is Kennedy or Rockefeller, you don’t need to spend the money to set up a trust. And depending on the laws in your state, this might be true.
But at the time, I was completely overwhelmed with all sorts of tasks outside of my knowledge base, and these loose ends were a huge relief to have done. So yes, that was a headache I didn’t mind throwing a little money at.
With two siblings, my hope is that estate planning and having a trust will prevent any potential squabbling over limited assets and keep us out of probate. I don’t think we’re the kind of family to squabble over assets, but sometimes the worst comes out in siblings (or in-laws and extended family) during this time.
And whether or not you decide to set up a trust, you will need a lawyer to get power of attorney, which you should do as soon as possible.
5. Attend a family reunionIf your loved one has parents or siblings that they haven’t seen recently, encourage extended family to host a reunion. Then make plans to attend. And if you are flying, your loved one with Alzheimer’s will need a current picture ID (see recommendation #1).
Everyone will be devastated to learn the news and will want to see and hug your loved one. As compromised as your loved one may seem from the disease, this is their best self. It will only get worse from here. Please, don’t wait to connect in person with far-flung family.
At the reunion, encourage family members to tell funny stories about your loved one and record this to rewatch over and over again. In our case, some relatives were unable to attend, so my brother hit the Facebook Live button, so they could watch in real-time and feel a part of it.
Don’t forget to take lots of pictures. Then upload them to an online photo service so you can quickly create a memory book. As Dad lost the ability to read, he turned to flipping through family photo albums and reminiscing about happy times.
6. Bonus Step: Track down passwords for email, cell phone, social media accounts, bank accounts, investments accounts, timeshare accounts, safe deposit boxes & anything else you can think of
I recently read an article in Mother Jones that reminded me of all the effort we expended trying to figure out how to log into Dad’s various accounts. We had an especially difficult time finding and accessing Dad’s safe deposit box, which was not at the credit union where he and Mom banked.
Avoid the wild goose chase and get as much of this information from your loved one with Alzheimer’s as soon as possible.
And finally, if you read this article all the way to the end, then you likely have a family member or close friend with an Alzheimer’s diagnosis. I am so sorry. I hope this has helped you to know what steps to take after an Alzheimer’s diagnosis.
If you have any suggestions to add, regarding what to do after an Alzheimer’s or dementia diagnosis, please share them in the comments section below to help others.
We’re all in this together!
I have read through this entire site. I feel the kindness, competence, and also the sense of humor you have, Sally, … through all of this. What a great caring way to honor you Dad … helping others navigate through uncharted (for them) territory. And I love how you ended … so compassionately. Love this!
We went through this John’s parents!!! His Mother had it and lived in NJ. His Dad was in total denial. It was so difficult. John has 2 sisters one in NJ and another in P.A. and she now has Alzheimers and her children place her in a nursing home facility. She had tested positive for the Covid 19 and was moved to a facility for patients who tested positive. She fell 4 times and had a concussion and a UTI and ended up in the hospital. She finally tested negative twice and is back to her original nursing home and better. It is a terrible disease. How is your Dad doing and your Mom??? I heard your Dad is not doing well. Thank you for sharing your info!!!! Love to you and prayers for your family!!! Mary Jo
Great advice for those who have loved ones with alchemists. My grandmother battled dimentia for 15 years, and it was hard to watch. She loved to walk, and she would get lost walking around the block. She spent the last 9 years of her life in a nursing home withering away. So heartbreaking.