What Happened?

BrainFog · October 1

Hello.

I am new to this resource and have greatly appreciated all the advice/stories/information I have read so far!

The clinical suspicion for my DH is EO AD. Less than 2 years ago, dimentia hit my dad hard and fast. I spent 6 months supporting him and my mom through it all. My mom needed a high level of emotional support and still does to this day. When he was placed in MC we were told we were the worst cast scenario b/c he knew what was happening and that made it all the much harder on him and us. Awful is not a strong enough word.

Now here I am again with my DH - scared and wondering "WHY????' My dad and my husband are both caring, hard working men who don't deserve this (no one does!). I am hoping I have enough brain cells left to manage the road ahead.

I feel like I myself have been in a post-menopausal brain fog for months - at work and home - making silly mistakes that are not like me at all. I am grateful to have a wonderful family who will gladly provide support when needed - we keep our grown childen up to date on everything so there are no surprises for them and they all live very close by - so we know we are lucky in that sense :)

My DH was approved for/then removed from an infusion study b/c we don't have Medicare. Not a fun path - but we are hoping to find another way in with the support of his dr. We are grateful to have caught this early so we can be as proactive as is possible with many things. We need to get our 'affairs' in better order so that is top of the list.

dayn2nite2 · October 1

I'm sorry you've been hit with the double whammy. I will give you some advice based on my experience. The brain fog is a result of the continued and unrelenting stress you've been under and continue to be under.

If you are like most caregivers, your health has been put to the back of the line, so I recommend a full physical if you haven't had one in a year or more. Give your doctor an example of the mistakes you are making. Your doctor will probably ask some questions to see if you are depressed (and it would be NORMAL for you to be). Depression can be the reason for the fog, or perhaps you are deficient in some nutrient like B12 or D3. Get the blood tests recommended and when your health is clear, please find a way to ask for more support to allow you a whole day a week away from caregiving. Perhaps you can find an online or a real-life support group.

I advise this because for too many years, I did not care for my health when I was on my caregiving journey and as a result I was diagnosed with diabetes and a few years later, cancer. I blame my lack of health maintenance and the sheer stress I was under for both. I am luckily going into my third year with no cancer, but I will always be looking over my shoulder. The diabetes is permanent. I have to check my blood glucose multiple times daily, take oral medication, and see my doctor every 6 months to have testing done to keep it from getting out of control. My A1c has gotten to the "prediabetic/borderline" level, but that is only with very strict diet and exercise, and I doubt I will ever achieve the status of "used to" have diabetes.

White Crane · October 1

Hello, Brain Fog and welcome to the forum. I'm sorry you need to be here but glad you found us. I'm so sorry you are dealing with so much with both your father and your DH. You said you need to get your affairs in order. That is exactly right and you need to do it as soon as possible. Contact an Elderlaw Attorney. If you can't find one in your area, look up nelf.org. This is important because they are well versed in how to help you navigate Medicaid laws in your state and get your Durable Power of Attorney (DPOA) for both finances and healthcare. You will need both of these.

If you haven't read the book, The 36 Hour Day, it is highly recommended and will help you understand what is happening to your Dh. Teep Snow videos on YouTube are also very helpful. Come to this forum often to ask questions and to read what others are saying. I have gotten more help and information on this forum than from any doctor.

Contact your local Area Agency on Aging and tell them your situation. They may be able to help you by providing respite hours and other help.

I don't know how far your DH has advanced but try not to argue, correct, or reason. It does no good and will only leave you depressed and upset. You can't reason with someone who has lost their ability to reason. Try to live in his world. Hard to do and you won't be perfect but it will help you when you can.

We are all here for you and understand. Sending hugs.

Brenda

harshedbuzz · October 1

@BrainFog

I am sorry you are experiencing this horrific double whammy.

I second what dayn2nite2 said. It's time for a visit to your doctor. The most important thing you can do for your DH is take the best possible care of yourself.

It could be your brain fog is a function of stress. But there are other conditions that can cause brain fog— vitamin deficiencies, low thyroid levels, chronic Lyme Disease*, post-COVID. Even if it's not any of those things, you might benefit from HRT if menopause hit you hard or a low dose SSRI for the anxiety/depression that often goes with the caregiver lifestyle.

HB

*Not long after dad died, I noticed memory lapses in mom and brought her to the PCP. He took my concerns seriously and started the workup with imagining and bloodwork in April. She had Lyme Disease (based on an ED visit in July with classic symptoms dismissed as arthritis); once treated she improved a great deal.

Michele P · October 4

https://alzconnected.org/discussion/74254/what-happened

Look into Dr. Dean Ornish’s lifestyle program. It is covered by insurance with cardiac diagnosis that is approved. His clinical trials reversed heart disease and is now slowing the progression of Alzheimer’s and in cases restoring lost function. This has been successful in early stage.

Sunfish47 · October 4

So sorry to hear what you’re going thru. None of our loved ones deserves whats happening to them.
If I didn’t have my daughters and grandchildren who live very close to us to love and enjoy, life would be mostly intolerable, but luckily I have them, and I am accepting DH illness and doing the best I can to deal with it.
A suggestion: I’m 76 now but clearly remember the post menopause brain fog I experienced in my 50s since I did not take HRT. I had an office job that involved numbers and finance back then, and most afternoons I couldn’t think straight to do my work. I remembered that Lecithin is good for mental clarity and started taking it daily. I don’t recall the dose I took but it totally cleared away my brain fog. Lecithin is inexpensive and readily available in the vitamin aisle of the supermarket. You could give it a try.

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