Early Onset Alzheimer's - Caregiving Journal Entry #4- Keeping Notes

My husband was diagnosed with Early Onset Alzheimer’s during the year 2020.

Because of the timing, there were no support groups I could attend. The online groups were depressing to me. So, instead, I talked to people close to me, people that would let me tell them exactly how I was feeling, with no judgement.
Caregiving for anyone is a difficult road. I don’t think any of us who are full-time caregivers really desire to compete to see who has it worse. It’s just hard, no matter your situation.

The first year was a wash of emotions for me; all the emotions. I felt like I was constantly on edge and on the verge of breaking into tears. You could ask me what I was fixing for supper, and I might feel like crying. I’ve never been that way. My family used to joke and call me ‘the rock,’ because I didn’t cry much.

One of the strangest parts of that first year of full-time caregiving, was feeling like maybe I was the one with the memory problems. Now, that may sound really odd, but I was thinking for both of us, providing an income, trying to figure out what I had to do financially to prepare for the possibility of paying for a care home or a home health person in my home. I wasn’t sleeping well, I wasn’t exercising or eating well, and there were days, when I would ask myself if it was all just me? I even thought through it one day. Maybe I’m the one with Alzheimer’s, but if it was me, wouldn’t my best friend tell me? But, what if she has and I don’t remember or didn’t believe her.

And, I was told that that might happen, by someone who had already walked this path with her husband. She told me to start keeping a written list of changes that I noticed in my husband; different behaviors, habits, and things he said.

Keeping a list on my computer, in a private notebook, helped me months after I had started keeping it. As a sole caregiver for someone with early onset Alzheimer’s, the days and weeks can blur together. It helped me to see that I needed to ask for help; that I wasn’t doing as well as I thought I was, mentally and physically. It also made it more obvious that the changes in my husband were real.

Even now, I can look back at my notes from two years ago and see not only the progression timeline in his disease, but my own health as well.

If you are a caregiver for someone with a progressive disease, keep a daily journal and make sure you have someone to talk to.
I’m still in the middle of this journey, as I write. But, I hope this helps you in some way, if you or someone you know, is going through this.

Anne

Early Onset Alzheimer's Caregiving- All the Paperwork

The early months of caregiving included a number of time intensive, busy activities for me and depression for my husband, who after suspecting for years that this was coming, suddenly lost his ability to drive and use power tools. Because some paranoia was already present, he thought the neuropsychologist was just against him or had used a test that would intentionally trip him up. Thankfully, his general doctor is very kind and smart, and was able to calm my husband’s fears and explain why driving was not a good idea.

I had to get our affairs in order. Legal, financial and longterm planning had to be done without delay, so there would be no question that he was lucid when he signed them. I had always handled all of our finances, with my husband’s input, and had been the sole income earner for 14 years. He had worked for FedEx Express for 18 years and retired after a 4th shoulder surgery was going to force him into a desk job. There were documents I needed his signature on and didn’t know how long he would be able to do that, so it was important not to wait on those.

With his early onset Alzheimer’s, I had to put aside my hobbies for awhile, and just concentrate on protecting assets and making sure I was prepared, as much as possible, to care for Dave longterm. My hope has always been that we, his family and friends, will be able to keep him home and not have to have him in a memory care unit for the duration of his progression.
However, my financial advisor and family, urged me to also prepare myself financially, in case that happened. At our younger age, a longterm memory care unit could wipe out a significant portion of our assets. And, so to prevent that from happening, if possible, we had to discuss and be more proactive.

The disappointment that I wouldn’t be able to relax a bit from my business at any time in the foreseeable future, the extra workload of handling the acreage without his help, the temporary loss of the dreams we had together for our empty nest years, led to a lot of sadness and hopelessness. But, with the help of advisors that I trusted, I worked diligently on steps to prepare.

Here’s a short list of the things I had to work on while Dave could understand.

• Updated our wills, DNRs, POAs

• Assessed retirement accounts with our financial planner

• Refinanced the house (the interest had dropped significantly, and this made sense longterm)

• Early Onset Alzheimer’s is part of the compassionate allowances for social security, so I requested that paperwork. This took almost a year of paperwork, an additional neuropsychologist evaluation and more doctor evaluations. But, it was approved and his SSDI payments started at age 60.

• Sold the extra vehicle since we had 1 household driver. He is still on our insurance, because if he is dropped off, that will start a domino effect of turning in his ID.

• Added spouse name as POA on his retirement pension

• Analyzed pension and beneficiary benefits to determine when to start it

• Doctor applied for a handicap tag for our car

• Sent a letter to the airline that he had credit for a ticket with a doctor’s note, asking for a refund.

• Reduced debt down to the home mortgage only

A year later:

• Found a grant application for a caregiver grant and applied

• Set up a time to talk to a home health agency

One thing I haven’t done is write out a funeral plan for both of us. This is something I wish we had done years ago, when our own mortality seemed so much further away.

Those are a few of the things we had to take time to work on, so we would be prepared. Not everyone will have the same list of paperwork, but I am glad we took care of what we did last year. I’ve been able to move forward more calmly, with more purpose in saving up for potential care bills, and less fear. It wasn’t comfortable having the conversations about finances and mortality, but it was better than just being afraid and not doing anything.

Anne