What to do after the diagnosis

heyyitsrachael

My dad was recently diagnosed with Alzheimer’s. However, his neurologist said he’s been on the cognitive decline for about 3 years already. Unfortunately, I only started noticing changes in his personality and memory at the beginning of this year. The things that were most noticeable were problems with his short term memory recall, the literal temper tantrums he throws when he doesn’t understand something, is confused, or doesn’t get his way, and his inability to be told he’s wrong about something. As irritating as the “for nothing” arguments get, I’m chalking those up to be a lesson in patience for me.

Regardless of any of that, I love him so much, and we’ve been super close for a long time, and there’s nothing I wouldn’t do to help him. I’m just feeling a tad overwhelmed being his only person. He’s not married, he doesn’t have any other children, and his siblings live very far away and don’t offer much help anyway. I just really need to know what to do for him as this disease progresses. A step by step list of what to do in terms of finances, care, living….anything that I should know/expect as a caregiver. Any knowledge or advice about this that anyone can share would be greatly appreciated. Since I’m basically all he’s got, I need to know how to do the best I can for him.

Thanks!

lsuttles

I am in the same boat as you, except it's my mother. Since my mom was diagnosed, I have obtained financial and medical Durable POA. That has helped us (my husband and I) navigate her care, pay her bills, and ensure she gets what she needs. My mom transitioned from independent living to assisted living because it was no longer safe for her to handle her medication. I make a list of questions for dr appts to discuss. It's a lot, and taking it one day, one week at a time, helps me process because it's hard. Having a sound support system around me has also helped me process the changes and the grief.

MP8

I think it's common to miss early signs.

I found the information in the Help & Support -> Caregiving section of the Alzheimer's Association site really helpful. It has suggestions for each stage. https://www.alz.org/help-support/caregiving that I found very helpful.

Also, having learned this the hard way (and still relearning it all the time), it's really important to take care of yourself. It's easy to spend all your time and energy trying to address issues for our LOs. (I say this as I am taking a sick day today because the last month has just worn me down from various caregiving-related activities to the point where I physically felt ill.)

Emily 123

Hi Rachel, So sorry you're here. Very often it takes a while for the family to realize that what's going on is more than memory slips. We certainly did! The memory is the most obvious thing, but the disease is also affecting areas of his brain that allow him to use reasoning and judgement, to be self-motivated, to be able to do multi-step tasks, to interpret what he hears and sees, and handle emotions. People are able to adapt a bit and cover up, so the person is probably struggling more in their day-to-day than we know. The confusion the memory loss causes and the sense of losing control will make them angry and irritated.

https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

Tam-Cummings-LLC-Handouts.pdf (tala.org)

If your dad hasn't done any estate planning, It would be a good idea to set up an appointment for you both with a CELA, a certified elder law attorney.https://www.elderlawanswers.com/elder-law-attorneys (There are also some good articles at that site.). You might want to ask around as well if there's anyone his friends, a pastor, etc., recommend.

This should come out of dad's finances, since the planning will be for him. They can help you look at your dad's financials, discuss what needs to be set up in terms of POA (power of attorney), healthcare wishes, etc., should he become incapacitated. (This is actually something we should all put in place 🙂) They should be able to discuss what options are available IF your dad's money were to run out.

Your dad should sign off with the doctor's office that they can share information with you (don't ask him to handle it-he may forget). Sign him up for any applicable online health portal his provider might use, and make sure you can access it.

Banks have their own POA documents that they want signed, so make sure those are all done once you have the POA done by the attorney. You may want to set up something where someone does your dad's taxes for him. Both the Social Security and IRS have online portals he could sign up for, but you should have a copy of the login/passwords. I would establish online auto-pay for bills as much as possible, and stop the paper bills from coming to the house. This is because he will eventually lose track of what he's paid, and seeing the paper bills will trigger multiple payments. You should be the backup contact (not the payor, though) on any accounts he has. At some point passwords and logins will be forgotten, and recovery can become a mess. I set all my mom's recovery information to be my cell #. If your dad's pretty forgetful, he may be at the point where he can get scammed or make poor financial decisions. You may want to discreetly set up filters for calls and emails for him. Maybe place some alerts that get routed to you from the bank if more than a certain sum is spent. Reduce to one credit card with spending limits.

Unfortunately, I would anticipate a future where he won't be able to stay in his home without significant support and oversight, which will get expensive. I wouldn't commit yourself to making 'The Promise' , which is that you'll try to keep him in his home as long as possible. There will come a time when he won't be able to make good, safe choices when he's on his own, or be able to 'rescue' himself from an accident. You may be tempted to sacrifice your own social and work life in the service of maintaining the illusion of independence for your dad. Don't. Read the threads. Often by that point a move becomes a significant upheaval for the loved one. I tend to agree that a move for the person fairly early on might be best, while they are ahead of the disease enough to adapt to a change in living quarters. Any place you pick should have a memory care available.