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

Early Onset Alzheimer's Caregiving - The Diagnosis

I can’t believe how hard it is to write about this stuff. Most of the rest of my entries will be for caregivers, of course. But I had to share our background in the previous post.

In the first year of caregiving, I had so many feelings and emotions going on; Grief, anger, sadness, hopelessness, irritation, frustration, loneliness. Of all the things that I was feeling, the hopelessness was probably the hardest to come to terms with.

With early onset Alzheimer’s, which is the only dementia I will write about, because that’s what my experience is in, there is no known timeline. There are general stages that mark the progression, but even those vary from person to person, depending on where the atrophy in the brain is and how the person responds to that.

Dave was diagnosed shortly after his 59th birthday, but he had shown signs of cognitive impairment for 2-3 years prior. But, he hid it well, as did his brother before him. Right away, both the neuropsychologist and his general doctor, agreed he was at the moderate stage and that he shouldn’t be driving on the road, using power tools like saws, or guns. It was up to me, his wife and caregiver, to enforce those things and it was very difficult.
He had inadvertently locked our gun safe and didn’t know the combination, so that was out of the way. But, I had to keep track of keys, in case he forgot he wasn’t supposed to drive to town. And, I had to take over tasks on our acreage that required power tools or hire someone to come over.
He was understandably irritated that the doctors thought he shouldn’t drive, and I took the brunt of that decision. He never was uncontrollably angry, but he was angry at me. I mean, who else would you be angry at, other than the person who appeared to be taking all of your independence away? It’s logical, and completely unfair.
And for me, because I knew there was nothing Dave could do about the disease and how it was making him act, I had to stay calm, not snap back when he shot me scowls or muttered at me under his breath. And for the next 5 months, I left the house alone only 4 times. He lost his independence, so many of the things he did from day to day, were activities no longer “allowed.” And, I lost my independence too. I could no longer plan I errands in town, while he was cutting wood or mowing, for instance.
During those first few months, I was busy though, with what seems mountains of paperwork to prepare myself for the coming months or years. There is no way of knowing how fast the disease will progress or how the person will respond to the progression.
Because I spent a lot of time figuring out what I had to get done and prepared while he was able to sign forms, I’ve put that together in a pdf that you can download, if it would be helpful to you. Disclaimer, I’m not a lawyer or accountant or therapist. I’m just living the life of a full-time caregiver and sharing what I’ve learned from my experience, which could be totally different than your journey, if you are also caregiving.

Until next time.
Anne

Dirty dishes mean I've failed and other lies I've told myself

Who am I kidding? During every season of my adult life, I’ve had dirty dishes sitting in the sink; except right before company arrives or on moving day.

Two days ago, in a flurry of kitchen clean-up, I once again determined that my life would be so much better if I made sure the dishes were done and countertops wiped off. Here I sit, morning of day 3, dirty dishes in the sink, clean dishes in the dishwasher, various hand-washed dishes and tools balanced precariously on the countertop.

And instead of beating myself up about it, once again, I decided to sit by the fire. And, since it’s just the cat and me this morning, I didn’t laugh out loud. But, I chuckled to myself. Who am I really kidding? I’ve been married 36 1/2 years, and more often than not, there are dirty dishes in the sink that need to be washed and clean ones that need to be put away. So, I asked myself, why does this bother me so much?

I decided it boils down to comparison. Somewhere along the line, I got it in my head that I would be a better mom, wife, hostess, entrepreneur, daughter…if I could get this part of my life organized. After all, other women seem to do it. Why can’t I? Do I just not care? Am I lazy? Did I just not nurture my marriage enough that my husband sees dirty dishes and thinks, ‘I know Anne would appreciate it if she didn’t see these dirty dishes.’ Did I not train my sons well enough to notice and to serve? What kind of mom was I? I see pictures of other families whose kids just jump up, do the dishes, dry them and put them away. Did I fail to teach responsibility or helpfulness? Are dirty dishes a sign of a lack of something else in my life?

The enemy, whether you call him satan or something else, seeks to destroy. That’s the truth here. Dirty dishes are just dirty dishes. They are the result of living. The day I have or create no dirty dishes, my life is probably over. Years ago, I finally felt like I understood how deceptive and wily the enemy is. He just never gives up. Which is why, on a Monday morning, after I’ve had my quiet time, seemingly out of nowhere, I’m questioning what all I did wrong that I still wake up to dirty dishes in the sink. That’s so trivial. You’d think the enemy would burn down my house; something a little more traumatic. But, what I’ve learned is, it’s not that obvious. The enemy seeks to devour and destroy, but where does he do that best? For me…it’s with doubt and guilt. Guilt over little things like dirty dishes. Doubt over a disobedient child. Even as a caregiver for my spouse, did I do something wrong? I thought empty nest was going to be a whole lot prettier.

Dirty dishes in the sink and a little irritation that I failed to somehow create a life where the dishes get dirty and clean, like clockwork; that’s all it took to go down this path of, ‘what is wrong with me?’

So, I’m trying something else. Gratitude. Dirty dishes in the sink, means there is food in the house and people that I love to eat it. Seeing the dirty dishes in the sink, means I’m awake to witness the miracle of another day. Dirty dishes in the sink, means that I actually have a sink and dishes. Dirty dishes in the sink means I have the opportunity to let my mind wander while I do the monotonous task of washing dishes.

I don’t think I’ll ever enjoy waking up to dirty dishes, but I don’t think I’ll kick myself about it anymore after today. Dirty dishes are dirty dishes. That’s all.