I get LOTS of messages from people who just found out their Mom, Dad, husband, sister has dementia and they wonder what they should be DOING! Surely there is some way to help them! I have some experience in what you should do, all learned from caring for my dementia Mom.
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Medical and Legal Disclaimer
I am not a doctor or in the medical field. I do have BA in Psychology but don't work in the healthcare field. My information is meant to help you and give you first steps in your process, but PLEASE, contact medical, legal and social professionals.
That said, I have found that much of the medical advice is super clinical and not all that practical in dealing with day to day life with dementia… sigh.
Many dementia peeps can put on a good face at the doctors office and her doctor may have been treating various ailments instead of understanding that your loved one's decline was due to dementia.
When I noticed Mom first had “problems” I started offering to take her to the doctor and lunch out afterwards so I could poke my big old nose into her medical business.
The first thing you want to do (if they agree) is to get a waiver so their doctors can talk directly to you. This is a form that all doctor's have that simply says that your LO (loved one) lets you know about their medical treatment.
This will become very important later when you have to help with their treatment. For example, Mom fell, was in the hospital for a week and rehab for two weeks. A month later I heard her talking to someone on the phone and she said she had been doing great and nothing was wrong… wait what? Give me that phone, I have some things to add!
Medicine – What is she taking?
Okay, this one was super frustrating to me! The first thing I wanted to do was get a list of ALL the medicines Mom was taking and I thought for sure her Primary care doctor could tell me. Nope!
The doctor's “helpful” advice was to go through the medicines on Mom's counter to figure it out. Problem there was she was taking old doses, had thrown out some bottles when they were empty instead of refilling them and all kinds of other problems.
If you would like to learn more about this, check out How To Figure Out Which Medicines Your Mom Is Taking … I have a whole post telling you how to put on your detective hat and figure this out!
Medicine – Getting Her To Take Them
Once you find out exactly what she is supposed to be taking on a regular basis, you will need to get a system in place where you parcel them out for her.
We use a 4 tiered medicine case that we put the first morning ones in rows 1 and 3 and the second morning ones in rows 2 and 4. Mom is great at taking her first one, but we have to remind her of the day and then give her the second ones. I just do the evening ones before I go to bed.
Now I KNOW, it seems like it should be easy enough to figure out someone's medicine, but honestly, I am pretty sure I don't have dementia and I forgot to take my antibiotics yesterday… so imagine if you had memory problems.
On top of that the thyroid ones she has to take an hour before the other ones, except on Monday when she has to take her arthritis medicine first and the thyroid gets bumped back. Oh and the other arthritis is two a day Monday through Friday but not on the weekends… for Pete's sake I have trouble keeping in mind all the bits and pieces of mom's medicine!
If you need some help with this, check out the free printable medicine list I have shared with my peeps!
Medicine – Dementia Medicine
Okay, this one is way outside my expertise so make sure to talk to your Mom's neurologist about this one! But, I don't think this gets talked about enough so I am going to put my two cents in here.
My Mom takes Memantine and Donepezil for her memory problems. The thing about these is that they will never help her get better, they will only slow the progression of her losing more memory.
What I have heard some people say is that they are going to “wait until Mom gets worse” before giving her the medicine. That is backwards with memory medicine. You want to give it them BEFORE they get worse to slow the progression.
Okay, here another “let's not wait until too late for this” one! But for sure talk to a lawyer and see what you should do!
To sign a “POA” or Power of Attorney someone has to be in their “right mind” and capable of making that decision. our attorney had to speak with Mom alone to make sure we were not forcing her to sign it.
What I have heard from some peeps is they waited too long and by the time they tried to get this, their loved one was not “in their right mind” enough to sign it and there were problems all over the place.
So the first thing you should probably get is a Medical Power of Attorney. This will allow you to help her if she is in the hospital and unable to manage her own care or if you need to step in to help with doctor's calls or medicine.
Mom is actually my Mother In Law, so I got the Medical POA and my husband got the regular POA (more about this in a wee bit).
Because I manage her doctors appointments and getting her medicine, having the Medical POA is super helpful!
A regular POA (Power of Attorney) lets you do everything as if you are that person.
So my husband Johnny can sign documents and help Mom with her finances, paying bills and taxes for her. This is especially sad because she was a bookkeeper for 20 years and seeing that she can't manage the most basic things is heartbreaking… sigh.
We got the medical and regular POA at the same time, I think it saved us a wee bit of money, but I am not sure!
Our Mom is financially okay. She owns her condo and now lives with us so she doesn't have to mind her money as much so people do, BUT for sure Johnny has had to step in and make sure her bills are paid because she forgets about them.
Another thing to watch out for is scammers targeting your loved one. Because dementia causes mental decline your formerly super smart loved one may not be able tell when someone is trying to run a scheme on them.
If nothing else, try to get the login and passwords for their bank and credit card accounts so you can check in and make sure nothing weird is going on.
These are super tough ones! Because technology is such a part of life now, taking away different technology is hard!
Mom is still mad at us that we took her cell phone away. She didn't talk to many people, but there is something so childish about not having a cell phone anymore.
That said, I had heard her talking to way too many people on the phone. She would take calls about her bank, scammers who wanted her to get her credit card and even calling to cancel her medical appointments (we showed up once and they said she had cancelled… wait what?)
Oh my gosh, if at all possible get into your loved one's email and unsubscribe them from any email list that is asking them for money!
There are SO MANY scammers, political parties and just normal people telling your loved one that they need to send in money (and they often do!)
I physically took her iPad and went through her email and unsubscribed her from anything that looked scammy!
Luckily for us, mom is pretty financially secure! That said, there is SO MUCH she can buy online now.
For example, we have had 8 (EIGHT!) deliveries of snacks from Walmart this week. Some of them were chocolate and it is 90 degrees here in Florida so they were ruined. She constantly orders double the amount she needs because she forgets that she already bought them.
I have a whole post about how manage when your Mom is shopping online so much!
Can Your Mom Live Alone?
The last thing you want to consider is whether your loved one can take care of herself… sigh.
Our Mom faked being able to take care of herself for quite a while… she talked about going to the doctor, said she wasn't drinking too much and was getting meal boxes to be able to feed herself.
Come to find out that Mom had given herself wet brain dementia by functionally drinking too much, not eating and generally not caring for her home or her pets.
Because the decline was slow, we didn't notice that she had lost almost 20 pounds and stopped cleaning her house. It wasn't until she fell and was hospitalized that we really found out how dire things had become.
Other peeps have talked about wandering, driving with dementia and even setting fires by forgetting pots on the stove!
A couple of years ago we decided to move Mom in with us. Now, I say that all happy, but it was a super hard transition and we had to keep reminding her why she couldn't live alone anymore and that she had agreed to moving in.
Some loved ones don't want to leave their homes or even believe that they are a danger to themselves. This is a good time to loop their doctor in and have them do tests to show them that there are actual cognitive problems.
Here are my best tips for when you move your Mom in with you!
What To Do For Dementia Wrapup
There are so many things I wish I could warn you about, but if you just want to get started this is a great list!
I KNOW, when we find out that our loved one has dementia there is a feeling that we should be able to DO something to help them, to make the terrible progression to come easier to bear.
I guess if there is only one thing I can warn you about is the frustration of memory loss that is different than caring for someone who is “just sick”.
You will have a conversation, think everything is okay, and then find out five minutes later that whole thing is gone and you have to try and get it figured out again.
Some days you will feel like the crazy one and that is okay… you are now a member of the “feeling crazy club” you never wanted to join, but here we are.
Just know that I understand and will keep writing things to help you (and me) as we go along on this journey together!
PS – If there is anything you want to know more about email me at email@example.com and I will try and point you in the right direction!