How we got a diagnosis of Alzheimer's Disease
I am writing a job description tonight so that we can hire someone to help Mom with some tasks around the house. After writing it, and describing in detail what Mom needs, I can't help but think... how did we get here?
A number of you have reached out and told me that your family is affected by dementia as well. Your most favorite people in the world- your parents or your grandparents or your significant other are slowly stumbling, losing the qualities and characteristics that made them-them. I'm so sorry you are here too. But I am so happy that you reached out and said something. Selfishly, it made me feel less alone and less shy about writing the truth of what this crap is like.
I wanted to write about how we got a diagnosis for Mom, and then some suggestions about what I would have done differently.
1. Tried to talk to Dad about our concerns with Mom. My siblings and I all tried this. On multiple occasions. Dad's response was often "Be easy on your Mom, she has a lot going on". And she did. She was handling Dad's diagnosis of Multiple Myeloma, being asked to manage medications and drive him to appointments and keep track of a ton of medical information. Dad was able to handle most of this on his own, but as he got sicker, Mom did more. Before he died, Dad was able to see that something was wrong. I saw him get really frustrated with her a few times, which now makes me feel less terrible and more human. If even my amazing Dad got frustrated, then surely it is okay that I do.
2. Tried to talk to Mom about our concerns about her. Well, if you thought talking to Dad went poorly... My siblings and I all tried talking to her individually and then collectively. She was FURIOUS and hurt and embarrassed and it was terrible. I thought she would have been able to recognize it. I thought she wasn't being honest and maybe she wasn't. Or maybe she had started to see what was happening and it scared the shit out of her. Sorry, there's no other way to say that. We all felt like we had overstepped our roles as "kids" but we were panicked. We were losing one parent to cancer and the one that was sticking around was being really "weird" and "kinda nuts". Pretty sure those aren't medical terms, but we used them a lot.
3. Tried to find a doctor to listen to us. I still can't believe we did this, but I went with Mom to her primary care doctor only a few weeks after Dad died. She must have been so tired and just probably wanted to punch me in the face. But it felt urgent- it felt like I could see her slipping away too... Her primary care doctor who had been seeing her and Dad for years asked her a few really probing questions like "How are you Rita?" and then "I bet you are feeling sad, right?" Turns out Mom could answer them really well. Then he turned to me and said "Well, I don't know what you are thinking but it's certainly not Alzheimer's or anything like that". I still remember Mom looking smugly at me as if to say "See?". It took us another two months, forcing someone to do a mental status exam and a lengthy cognitive exam followed by an MRI to get our diagnosis and allow that terrible word to enter our lives. Find out more about getting a diagnosis here.
Here is what I would recommend as a better approach.
1. Call the Alzheimer's Association at 1-800-272-3900. Ask to speak to a counselor and run them through what is happening. They have been a wonderful resource and will talk you through the process.
2. After getting any needed referrals, find an expert in dementia. This was NOT Mom's primary care MD for us. To get a diagnosis we ended up at a Neurologist's office. We quickly switched after he left a voicemail telling us Mom had Alzheimer's. I believe the quote was "not much we can really do to treat it". On an ongoing basis, our go to physician has been a geriatrics physician. She continues to guide us through the process of what is coming next, what to expect and how to balance taking care of Mom and being realistic. If you are in the Philly area, send me a message and I will tell you her name- she is truly wonderful.
3. If the person that is sick is your parent, talk to your siblings. Who is going to handle doctor's appointments? Who will respond in an emergency? Who will clean the fridge? When does Mom or Dad need to move? Have a meeting together outside of anyone's home if possible. We did it over drinks and some awesome Greek food. It helped.
4. Call your insurance company and get help. Find out what they cover. We are just learning that people with Alzheimer's might benefit from speech therapy and it's covered by insurance. We are learning about when to use long term care, when to hire an aide and when we need a nurse. There are people that have gone before me in this process and I am trying to let them be my guide. Find a guide or two.
5. Tell people about the diagnosis. Don't isolate yourself. You will need their help, often and randomly. Your parent might be embarrassed but you don't have to be. Maybe it's my Connecticut upbringing but it felt weak in some way to admit that Mom had a memory problem. Cancer we can talk about. But a mental problem? Let's just pretend it's fine and go out for ice cream. Don't be like me. Talk to your friends and family as soon as you get a diagnosis and keep them updated so they can help. Don't close your circle off. You can find more help here .