HAVING THE ALZHEIMER’S CONVERSATION…
While I don’t think that there is any way to prepare yourself for dealing with Alzheimer’s Disease on a daily basis, I do think there are ways to get ahead of the game…just a little.
Alzheimer’s is the only disease that you can’t prevent, you can’t slow down, and you cannot cure.
It is an absolute death sentence. It’s a difficult disease to live with as both the patient and the caregiver. The consistency of it can be exhausting and Alzheimer’s will last for years.
As our parents’ age, we know that as women we are most likely going to be responsible for their care.
Two-thirds of all caregivers are female.
[Tweet “As our parents get older we start noticing the changes and we think, “what should we do?”. The worst thing you can do is nothing at all.”]
Although there is never an easy time to have this conversation you should have it as soon as you start noticing the signs of Alzheimer’s. Here is a link to a post I wrote a few months ago “10 Signs of Alzheimer’s/Dementia”. There are so many things you will need to know, things you will have to do, so any information you can gain now will be a huge help to both of you later.
First and foremost, this isn’t something that can be taken care of after one conversation. It will take quite a few to figure things out. You need to know what kind of plans your parents or loved ones may have already made.
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Do they have a plan in place for these changes and if so what are they?
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Have they decided who will be their care manager?
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Do they have a living will?Did they purchase long-term care insurance?
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What decisions have they made in regard to their care when they can no longer do it themselves.
If your loved one hasn’t made a plan then you need to come up with one together.
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Who will be their primary caregiver?
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Will it be a family member or a professional?
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Will they live with you or go into an assisted living facility or a place specializing in memory care?
So many questions and so very little time. While the disease may last for years their mental capacity and ability to make important decisions won’t.
You don’t want to live in denial if the facts are right there in front of you.
Most caregivers only become caregivers after some emergency has forced them to take over.
It is usually very sudden with no time to prepare. This is hard not only for the caregiver but also for the patient. With proper planning, you can transition yourself into taking over with minimal disruptions.
Protecting our loved ones is the goal.
Don’t wait until your loved one has wandered away or gotten lost.
Until they forget to take important medication and end up hospitalized.
All of these situations can be avoided with some proper planning. Keeping them safe, secure, and happy is our job. Getting the information you need as soon as possible is a huge step in getting prepared.
For more information on living/caring for someone with Alzheimer’s, I suggest these books.
The links below are affiliate links which means if you decide to purchase one of these books I will earn a small commission that will in no way affect your pricing.
Very good advice Rena. What did you think of the movie Still Alice?
I haven’t seen it yet but I’m waiting for the book at the library. I wanted to read it yet.
Such valuable advice Rena. You are helping so many as you go through your own struggles. Thank you!
Thank you Nancy! I hope it does some good!
I wish you had been writing your blog when we were going through this! We were the ones who didn’t plan for anything and had an emergency that started everything. Great advice here!
That’s the way I started as well Lana! According to statistics almost all caregivers start out this way!
Advice from someone who knows is so helpful. You are right on with this.
Thanks Carol! It’s scary when you faced with all of these sudden decisions and no where to turn!
It’s such a hard conversation to have – especially when the person concerned doesn’t acknowledge that they are heading down the slope. I think keeping these things in mind and having a plan is a really good place to start – thanks Rena
Leanne my mother was the exact same way at first. It was a fight to have a simple conversation where the word Alzheimer’s was mentioned. It’s only been in the last 9 months that she finally realizes that she is where she needs to be. That she really shouldn’t be on her own anymore. It was a fight to get there though. Actually it was when I quit fighting her about it that she realized the truth!
Very helpful Rena! As someone who also lived through this experience I agree with everything you’ve said here. It’s not easy, but it is very important. Thanks for sharing your advice with others. ~Kathy
Thank you Kathy! I think that is that this is the one thing that I would stress the most. Have that conversaton immediately. I haven’t found one person who says they were prepared for all of the changes that you go though.
Such helpful advice. Thanks Rena.
Thank you Sharon! I appreciate your comment!
Rena, you always have such a fund of practical, workable tips. Thank you so much!
Thank you Diane. In this case it is a “do as I say…not as I did” haha!
Such a difficult subject, such a difficult conversation. But you’re right, once it’s too late, there’s no going back.
You’re right Karen. You only have one shot to get it right, Waiting can be detrimental to everyone involved.
Great advice…..and you say it gently but firmly. I like that you include the symptons link her. Your blog is always so sweet but real…..and I love how you always pay fribite to your mom!.
Thanks Joan. Mom is the best…that’s why I always try to give mine to her.
Fortunately both my parents have their cognitive skills intact. However, my brother-in-law had a stroke and heart attack that sent his memory over the edge. No way to have prepared for that, but the daily conversations are interesting. He forgets that he forgets.
That’s eactly it Kimberly. They forget that they forget. It’s really an amazing and sometimes painful thing to watch.
That’s terrific about your parents but I SO understand the daily conversations with your BIL!
Great advice, Rena! This is NEVER an easy conversation, but an important and brave conversation. Thank you for the advice!
Thanks Kelly! I really appreciate your comments.
Yet another post that will be so helpful to so many people Rena. You are touching so many lives in such an important way.
I hope so Susan! It is so very important! I appreciate your support so very much!
its a conversation I fear having with my own children one day. I hope I never have to – but will plan ahead (as its in my nature) – and keep your tips in mind. Thanks Rena.
Thanks so much Liv! I hope you never have to have that conversation either!
Such great, important advice Rena! We need to ask those questions to prepare ourselves to help the best way we can. Bless you for sharing and helping from the trenches!
Thank you for the support, I’m just doing what I can with what I have.
This is such great advice. Ignoring the signs of Alzheimer’s only results in more problems. It is always better to be proactive rather than reactive about healthcare.
We chose to brush off the warning signs when it came to my mother. I wish we had been more proactive in the beginning.
Such great tips. Since I didn’t see my Mother all the time I noticed some behavior changes quickly that could have been attributed to just old age but .. She started having some UTI’s which made her kind of crazy but even when that was controlled there really were changes.
It’s harder to notice the changes when you’re there day in and day out. Looking back is when you notice the biggest declines.
This has to be one of the hardest conversations ever. In our family, we never really had it. We all were complicit in some pretend world. I regret it so much.
We lost my grandma in August after watching her slowly drift into dementia and it was hell. I really pray I don;t have to witness my own mom fall into that but as you said if the time comes those decisions need to be made.
LIFE IS ALWAYS ABOUT GOALS. Otherwise, we find ourselves in deep shit. Your love for Momma and your research and caring are the only way to go. Wishing you the best always, Beth
As always, you give us such good information from your vantage point of having “boots on the ground,” Rena. I had lunch today with two high school classmates, both of whom are dealing with parents who are slipping–and they don’t know what to do about it. I’m going to send them a link to your post.
Thanks for this great advice. You are such a wealth of information, and I appreciate you sharing all of it.
Passing on all this great information – I’m sure that all of us could benefit from it 🙂
This is great advice! I have a friend who is dealing with this and I will share it with her.
My 91 year old mother is getting very forgetful. She’ll be moving in with us at the end of the year. Patience. Patience and more Patience. I tell myself every time she’s asked me the same question ten times in as many minutes. But I love her to death and I’ll be there to care for her. Always.
Very helpful post Rena! You always come up with such workable tips! Thanks for sharing these!
My children and husband know that I don’t want them to care for me in their homes, but to place me in a care facility. I know they love me — they show that every day. Hopefully they won’t have to make that decision, but I hope I’ve made it easier if they do.
In my 25 years of working in a shelter home I have had the opportunity to see those with alz transform. They go through many stages and need loved through each of them. They have love to offer as well. They may get confused but they know what they know they remember the past but may forget the now. ALZ is a terrible disease I hope one day they find a cure for
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Excellent advice. My boss’s husband passed away from complication of Alzheimer’s a year ago. Some of the stuff she went through with him…he was in denial about everything and when it got to the point where he didn’t know what was going on, it was too late for her to do anything about it.
my bio grandmother recently died from Alzheimer. it’s a scary thing that i don’t wish on anyone.
This is such a sad disease. It is good to be proactive and plan as much as possible.
I’m afraid I fall into the category of an emergency caregiver. And I guess I’m not alone. Thank you Rena for this insightful post! You’re so right, preparing for it in advance can be a life saver for many. xx Abby