My father was just diagnosed with early stage dementia. I'm concerned about my family in MI. How do I help from far away?

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My father was just diagnosed with early stage dementia. I'm concerned about my family in MI. How do I help from far away?

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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.

Alzheimer's & Dementia Long-distance Caregiving New to Caregiving

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You find a way to sit down and talk the talk - at least try. Get a Power of Attorney for both at once. Take care of their affairs and make sure everything is in perfect order and current. Start researching caregiver options vs. placement and consider all aspects - get facts and then start looking at your best options. But first, talk with them and get input from them. This should have been done long ago and since it was not, you must do this now. It will lead you to the right path.

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Imho, show love and compassion to your father as he adjusts to his "new normal," if you will.

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Who ever is with him or comes to visit him...Just "meet him where he is" at the present. What he says is "where he is" respond with your loving continued relationship you have always had. You will say many times "yes dad" I will....or I will help. some times he looks worried...arm around his shoulder and say "i am here" Dad. Everything he says...do not argue, or try to reason why he says and responds to what is in his mind (to him). This will escalate and get frustrating and you must continue with loving and a tender response. What he says or does is real to him. Go back when you cared for your infant. You just did what the child needed. Now it is just something that re-assures him so he can have a little peace with what he is thinking or doing. Physical care will increase..but always let him "do it" while he can. Someone around him must have a "caregiver mentality" and have primary responsability. When he gets agitated and gets hard to deal with...their are anxiety drugs when taken a "little dose" really helps. Later...when you or...can not do it any more it is time for "memory care" placement. Be sure while he is "doing well"..get his estate squared away cause a probate attny. will get more than he deserves.

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This is perhaps the most wise and helpful comment I have seen in many years on this forum. You have keen insight into the malady of dementia. Thank you.

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Deep breath. Dementia diagnosis is scary, but usually the illness progresses very slowly - until it doesn’t. Living so far away probably means your role will mostly be supporting your mother and the local family taking care of your dad. It will become extremely important that your mother and sisters can vent. I suggest listening more than trying to fix things. I also suggest supporting decisions. (Often, the far away family thinks they are helping by suggesting more and more things the local family should try.) As far as time period of progression, you will find it varies wildly. 1) What type dementia? Some progress more quickly. 2) What stage dementia is he currently in? Please continue to come to this site. There are plenty of people here with lots of experience.

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I keep recommending that people contact the Alzheimer's Association for advice and resources and information about dealing with all aspects of dementia-related issues: how to communicate with your father; what to expect in the progression of his disease; what conditions do you need to be following with his doctor; where to find local support where they live in MI; support and re-assurance from other care-givers and family members.
The Alz Association is very generous with their information. It would be a great place to start.

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This is a great question and I applaud you for wanting to be involved. So many caregivers have to take on the role simply because of their proximity to the loved one who needs care. One way you can help (with everyones permission) is to order a few wifi cameras your sisters can easily set up in your parents home. (I recommend Wyze brand on Amazon because they are very inexpensive, easy to set up, and work really well). Once the cameras are set up, you can monitor them through your smartphone and this will give you a day to day real view of their daily life. If you stay in touch with your sisters and parents via phone or Zoom, and offer your help, it will be invaluable support. Just knowing you are willing to help in any way you can will feel good to them.
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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Start by educating yourself about the type of dementia your father has since each one looks a little different in terms of length, behaviors, and needs.

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.

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Every one is different and handles things differently.

You should Google dementia and read all about it.

It's good that your parents have other children close by to help.

Just start calling your Dad as usual at least once a week, you can do the talking or just ask him a couple questions. It can just be a 5 minute conversation just to say hi and show your love and support.

TRyan to visit as often as you can while he still has his memory.

Ask him to tell you a story about when he was young or how he met your mother, ect, just let him reminise.

Send him a gift to help keep his mind active.

Prayers

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Hi again, also wanted to add that your dad will begin to lose his executive ability, and so will not be able or even care to initiate doing things he used to. He won’t really think about them, and his new normal may be much less active than he used to be. It may even be that he wants to avoid them as he can’t complete them on his own, and the caregiver ends up doing the project with his help. It’s very stressful to see, and to adapt to. From a distance it may seem like the caregiver isn’t engaging them in activities enough, but the person with dementia will have a comfort zone and routine that they like to operate within, and sometimes ‘less is more’ keeps them stress free. We kept badgering my mom about going swimming which she used to love, but she started not wanting to do it unless someone else was in the water with her. (She could still swim fine). So that had its limitations when I was also working. Just stuff you might not hear from your mom or sisters, as it becomes part of the routine. The get up and go...goes, so just be aware that it becomes incrementaly harder for the carers to get them up and going, and that the new routine may be much less active, and that’s ok.

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Do not abandon them.

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.

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A lot of good, practical advice in your post. There is a lot you can do from a distance to support the caregivers.

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Speaking as the care giver to first my mom, then my stepmom, and now my husband, what you don't want to do is offer advice and criticism when your mom or another caregiving sibling calls to tell you what's going on. Instead of asking me what help I needed, I was bombarded by "why did you do that", "why didn't you do this" "you should have done this ", "you shouldn't have done that". Instead, be a listening post, let them cry and vent and scream and cuss, and be sympathetic. If they ask what you think, then by all means, offer your opinion. Volunteer to help with making phone calls, or sending letters. Sending you a hug cuz this is a painful journey, but these folks on this site will help you sort out your feelings and give you great advice

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Great advice. My out-of-state sister was an arm chair critic for the last 2 years our mom was dying, fighting me every step of the way. Even threatening a lawsuit. Destroyed our relationship.

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Great suggestions on here as always. This forum is a great resource, as is this:
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,

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Lots of good suggestions here already.

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.

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I read your profile so I would encourage your parents to move to the Fenton home, downstate there are more aides and funding and the hospital in TC sucks, killed my grandpa with incompetence, my mom was a NICU nurse and wanted to sue over the incompetence. My grandma comes downstate since they screw up her meds if she goes to ER.

Next, talk to lawyer, MI is different. PM me if you want contact info for a decent lawyer.

MI is very different than other states.

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A couple of things that occur to me that you can do:

-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.

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I full well feel for you. My brother was in a car accident, and very quickly diagnosed with early probable Lewy's Dementia. Perfectly capable but experiencing changes we quickly jumped at one on the paper work. That is CRUCIAL to get done while your Dad understands he is giving over this power to protect himself. I was made POA and Trustee of Trust. I arranged all bills and payments to come to me and I paid, and sent out a month accounting to him of all assets in and all out. We together arranged to sell his home with a truly dedicated and understanding realtory. My bro was in So Cal and me in the North of the State. He moved to Assisted living (as he was alone, and had an ex partner and still friend in the ALF). He gave up driving. We took care of all issues. Exchanging driver license for ID card, and etc. We made certain his SS check poured into his Trust account. We attended banks together.
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.

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This news is pretty fresh so maybe give them a little time and personal, private space to process it. I think the "natural" reaction of concerned adult children is to call and want to talk about it, but not sure your dad is this type or guy or communicator. Maybe start by one sibling "spokesperson" asking them how they are doing and if they want to be helped right now, if at all. If they waive you off, that's their decision but eventually your mom will need support.

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.

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My father was just diagnosed with early stage dementia. I'm concerned about my family in MI. How do I help from far away?

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