I live in CA, they are in MI. I wouldn’t say either of my parents are prepared for this. My father certainly is not. How do I help from far away? How do I support my mom and sisters? How do I communicate with him (he wasn’t a big talker to begin with) as time goes on? What can we expect and in what time period can we expect it to happen? When you start walking down this road the gravity of it becomes far more real as does your own mortality.
Call, listen, visit (when it’s safe). Show appreciation and support to those on the front lines.
Let the people who are physically there make the hard decisions and provide encouragement and support for whatever they decide. We had arranged to care for my parents in my home and the decision was firm. One relative occasionally “helped” by bombarding me with forwarded websites of nursing homes, care centers and assisted living complexes.
Sending occasional favorite carryout meals or even groceries or a Starbucks treat is easy from a distance with all the convenient delivery services available. Don’t forget the caregivers - they may need it most.
Ask to take on an overwhelming project - such as paying bills, Zoom screening caregivers, researching new doctors and setting up initial appointments- to reduce the burden to those close by. Don’t ask, “what can I do?” - offer instead tangible tasks that are within your skill set they you can do without creating more work for anyone local.
When it’s safe to visit, spend your vacations helping out - your other family members can have a break or even go on vacation. Savor these opportunities while you have them. Really pitch in on these vacations - don’t create more burden.
Dementia has no timeline. It can be painful and frightening for caregivers and patients both. It can require 24/7 attention. It is often over diagnosed and a diagnosis of “early” dementia can just be a bad day.
Be present. Be supportive. Be a good, kind listener. Listening can be the most important job you do.
Do what you can to take care of the caregivers.
Don’t ever ask questions about estate planning, even if you think it could be helpful.
Often, under these circumstances, family members vanish. Don’t disappear.
And we TALKED. And talked and talked and talked about his diagnosis. You should count now on frequent trips home to support Dad and Mom, to discuss end of life issues and paper work. She may be POA but there should be a second, and yes, this can be done from out of state.
My brother was thankful he knew what was happening in his brain and why he saw the world as he did and was anxious always to tell me what he saw. And he knew what was coming. I am now so at peace that a year later he got a sepsis that took him, at 85. He did not look forward to the long slow slide nor did I. I am thankful he didn't have to do it. He asked to go home on Hospice to die in his own bed, and that is what he did.
No one can predict, as you can see. We thought we had years. We had just got everything worked out and running smooth. Then he was gone.
I am so sorry. Support your Mom the best you can. And it is honestly very important now that there are several trips home a year. Phones and emails just don't work with this very well.
My best to you. I know you are in shock. We sure were. And now the journey that you have no choice but to make begins. I wish you the best, hope you will update us, and hope that things go well as they can go for you all.
-order groceries for your parents
-arrange for a meal to be delivered once or more per week.
-arrange for a housekeeper to clean their house
-on your visits, help mom with sorting through items she may want to give to other family members, donate, or toss. If the time comes to sell, just having done SOME of this will help.
-arrange for sitters to hang with Dad, so Mom can have some time for herself.
All of these should be done with your parents’ funds, if possible.
-research possible Assisted Living situations, so that you’re not scrambling, if the time comes. You can do this via the web.
-Send Mom little treats, or flowers, or whatever, so she knows you are thinking of her.
-Read on this forum, to find suggestions for other needs that caregivers have.
Good for you, for being that family member that so many of us wish we had.
Thinking ahead, you and siblings need to cooperate together as you embark on this journey with your parents. Choose one to be the spokesperson to your parents. This person would then send out email updates at the same time with the same info to the others. This is not to say only one sibling ever gets to communicate with them. This is the future care advocate/coordinator. It gets very messy very fast if siblings go off doing their own thing individually with your parents. Clear, transparent communications and actions is the key. Not every sibling with be on the same page regarding opinions about this or that. This needs to be sorted out beforehand if at all possible.
I'm so sorry for your dad's diagnosis. Many many on this forum will step up to give extremely valuable insights and support from their own personal experiences. May you receive peace in your heart.
My thoughts ... Have you asked your mom what she needs, how can you support her? I'd bet she's feeling pretty overwhelmed about now - is she a person who would like to talk about what she's experiencing? Are you a good listener? Because being a good listener is one of the best gifts we can give someone sometimes.
Learn what you can about dementia. It progresses in stages, as you probably know. Hopefully your dad will stay at this stage for some time, and you all will have time to make adjustments.
Perhaps your mom and your sisters might consult with an eldercare lawyer in their state to discuss asset management, Medicare and Medicaid rules, etc. A good eldercare lawyer knows how to navigate the system to best serve your mom and dad.
And don't lose sight that good communication and compassion for everyone affected is important. That includes you. Being far away is difficult, especially if you're raising children. So, be kind to yourself as well as the rest of your family. Know that you're doing your best - the fact that you're here asking questions indicates that you want to help.
https://www.alzconnected.org/discussion.aspx
My SIL was great about calling and texting to check in on how I was doing and allowing me to vent. She and my friends were so patient when they listened to me. It must have been so repetitive for them-like with the dementia, it was the same things, over and over, but it was such a relief. So be that open ear for your mom and sister.
Do send pics to your Mom and Dad frequently in whatever format's easy for them-for my mom it's email. Just a little something to share that they can talk about - a nice sunset, the kids out playing, etc.
I liked this series, and Teepa Snow has excellent videos on youtube as well:
https://www.youtube.com/watch?v=eatTGAbUP90
Talking with your Dad: This is a little long, but good-it kind of goes into does and don'ts: https://www.youtube.com/watch?v=ilickabmjww
I found the below helpful for my understanding my mom's behaviors and managing my expectations, especially on days I was getting frustrated:
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
Best wishes,
Talk with your family about what are the needs right now. You may be able to come visit and give your mom a day or 2 off while you care for your father. You may be financially able to pay for housekeeping, set up online grocery shopping, or pay for a sitter for a couple of hours monthly/weekly when those needs become an issue. It may be easiest right now to just be a safe person that mom and your sisters can talk to. You don't have to have the answers, but you can listen and affirm your love to each person. Of course, set up time to video chat with your dad. He still needs "visitors" and interaction with you.
Dementia moves at different rates. My mothers went from Mild to Moderate within 6 years. It started with simple, ordinary forgetfulness, and then progressed to where she forgot what, when, and if she ate. She snacked on junk food because she thought she ate. She forgot to take her meds. She stopped simple household tasks like cleaning the counters, sinks, floors. It progressed to where she was only "in the moment" and would forget a conversation 3 minutes prior. Having your Mom there will help, because loneliness seems to accelerate the process. My advice is to "be there" in every way you can - whether its in person, virtual, or phone visits. Lastly, I would encourage your parents to contact a well regarded elder attorney to put their affairs in order while your parents are still able to make decisions about their health and finances. I can't stress this more. Best of luck to you, and welcome to this wonderful site!
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