Dementia is on the rise. In 2020 more than 7 million Americans had it and that number will almost double by 2040. And memory loss is no joke. So today I want to talk about how to care for a parent with dementia.
I have first hand experience as both my parents had it. Oy. What a time that was. Mom’s dementia eventually turned into full blown alzheimer’s disease which eventually took her life some 15 years later.
Dad’s was quick. We got him into the hospital before his dementia got worse and after only 3 or so years he finally passed on.
Many adult children are going through this right now – dealing with elderly parents who are already received the dementia diagnosis or are in the early stages of dementia. Whatever situation is yours, it’s important to know how to care for your parent with dementia.
I think it’s a really good idea to educate not only yourself but other family members who interact with your aging parent so that they know how to best handle their emotions and be able to provide loving care.
There are 3 stages of dementia so we need to understand how dementia actually goes through stages so you are best prepared.
(this article may contain affiliate links so if you make a purchase I may make a small commission – affiliate disclosure here)
When You First Learn Your Parent Has Dementia
Honestly, it will be such a shock and a hard blow to you and your family. I remember when mom first started I was angry and in denial. I was mad at God and the world.
- How could this happen and why her?
- Why not my dad (whom I never got along with and never liked)?
- What do we do now?
- How are we supposed to take care of her?
- Why is this happening?
The last one I asked a million times. Why her, why is this happening to her? Your whole world goes into a tailspin and you want to get off at the next stop.
You have no clue how to care for a parent with dementia and you’re pissed it’s your mom. You are sure someone made a mistake.
It’s no mistake.
It was really hard for all of us. My mom was sharp as a tack, smart, educated, well respected, had her sh*t together. My mom was solid as a rock. She basically held the family together.
Find someone to talk to. A really close friend, a minister, a family member, anyone!! You need to talk about your feelings because you will feel things you’ve never felt before and it’s so much better to hash it out with someone close who you trust.
It’s also a really good idea to do some research of your own on dementia. Once your parent has been diagnosed, you may be assigned to a geriatric care manager. If not, see if you can find one as they would also be a great person to talk to about your feelings.
You may get really angry and it’s best not to take that anger out on your loved one. Talk to someone who can help you with your emotions.
The Different Types of Dementia and the 3 Stages
While there are many types of dementia, for the purpose and ease of this article, we are only going to discuss the dementia that leads to Alzheimer’s Disease but here is a list of the different types.
Make sure you get a proper diagnosis with your primary care doctor so you know how to care for your parent with dementia properly.
According to Mayo Clinic, there are 5 different types of dementia:
- 1 Alzheimer’s disease
- 2 Vascular dementia
- 3 Lewy body dementia
- 4 Frontotemporal dementia, and
- 5 Mixed dementia
You can read more about all the different types here.
My mom had the type of dementia that quickly turned into alzheimer’s disease whereas my dad had early signs of dementia before he passed away. That truly was a blessing in disguise.
The 3 stages are: early, middle and the later stages. It’s really as simple as that albeit, not so easy to deal with which is why I wrote this for you, to help you and make it a wee bit easier.
It’s important to remember that your parent is not themselves. You absolutely can’t compare your parent now with the parent who raised you, and expect the same kind of behavior.
They are a completely different human being and chances are, you might not like this human. They can be mean, belligerent and can have very aggressive behavior. Keep in mind this doesn’t happen to all dementia patients but it may happen to your parent so be prepared.
Actually, you’re never truly prepared for this behavior and all the other behavior changes that come with dementia and alzheimer’s disease. It’s different every day. All the time.
I remember when my mom first got the diagnosis of dementia, we were all in shock.
Learning to Care For a Parent With Dementia
Mom was the rock of the family. When she received the diagnosis of dementia, it was a blow to us all. “How could this be”? It was so hard on all of us. We knew nothing of this disease!
The only family caregivers at the time were me and one other sister. Our other 2 siblings lived out of town so we were on our own. Though my aunts did step in and help out quite a bit, thank God.
When I tell you you need as much help as you can find, I mean it. It’s exhausting being a dementia caregiver. Not to mention it can take its toll on your own mental health as well.
The parent who raised you for all those years, is now basically a child and needs your help.
We tried to keep mom in her own home for as long as could to make sure she was comfortable and still in familiar territory but that only lasted a few years until she started having seizures and ended up the hospital, and then a nursing home where she lived out her days for almost 15 more years.
And it wasn’t pretty. I’m not going to sugar coat anything here. Doing so won’t help you at all.
When my mom finally ended up in long term care she was a vegetable, in a diaper, in a wheelchair, being spoon fed mush. That’s how she lived out her days. Not able to talk, or even open her eyes half the time.
A vegetable. Be prepared.
Sorry I felt the need to tell you that and be completely honest here. I think it’s important to do the best you can while your parent is still at home and try to make the most of their time there.
We did have respite care come into the home 3 days a week just to give ourselves a break. You should look into that as well and not think you can do it all yourself. You won’t be able to and I don’t care how strong you are.
You can reach out the alzheimer’s association in your area to find good in-home care.
It’ll be tough especially if you have a family of your own and still maintain a full time job.
A Few Crucial Things You Need to Have in Order
There was one thing we didn’t do before mom went into the nursing home that we absolutely should have and that was sign a “right to die” form. If my mom knew we kept her alive in that vegetative state for 15 years she would have been so pissed at us.
If your parent is really just at the very early stages, get this done.
You also want to make sure that power of attorney and executor of the will is all in place as well. I know it sounds premature and morbid but it’s not. It’s mandatory and will save you many headaches down the road.
Your parent’s financial business should also be in order. Accounts, mutual funds, credit cards, house paper work, everything!! Get it all done asap.
How to Care For a Parent With Dementia: 10 Tips to Help You
After I share these 10 best tips on how to care for a parent with dementia I also want to share 5 things you should never do while caring for your parent. Please don’t forget to check those out too.
1 Form solid support groups. The first thing to do which I think is quite possibly the most important in my opinion, is to make sure you have good support groups in place, whether that be family, friends, neighbours, whatever. You need them. Trust me.
If you don’t really have any family or friends, you can reach out to the alzheimer’s association to get support and help from them. They are more than happy to help.
If you do have a network of family and friends, make sure you have the phone number of all the people who are in these support groups and that everyone has these numbers. If you can’t be there at a certain hour, it’s good to know you have someone you trust who can fill in for you.
Ensure that everyone knows what the care plan is for your parent and what the daily routine is. It’s probably good to make a checklist, which leads us to number 2
2 Write out their daily routine. Make sure you have this all written clearly on a piece of paper so everyone can see it. It’s important for the other family caregivers to know what the personal care plan and daily activities are, otherwise you’ll confuse your parent.
And this is not easy to handle.
They are already confused enough as it is and they KNOW they are, especially if they are only in the early or middle stages. They do still have the odd lucid moment.
Household chores, daily hygiene, personal hygiene, meals and even a note on the difficult behaviors your parent might be displaying. The goal here is to make the dementia patient as comfortable as you possibly can in their own home.
3 Be patient and flexible. Your parent is going to do and say some really bizarre things daily. They will do things that make no sense and may even make you angry or disgust you. Trust me on that.
My mother had a hard time figuring out toilet paper and started using the towels that were hanging to wipe herself. She would chew with her mouth wide open and talk with her mouth full of food. Things she would never do otherwise.
She also use to call people inappropriate names, that I can’t write here…haha. She would say mean things all the time.
Don’t take any of it personally, learn to take it all with a grain of salt and never forget that this person is not the same person you grew up with. You must never forget that.
They may be an older adult but their behavior will be that of a child. Take a deep breath and smile through it.
4 Take them out for exercise. They still need to exercise, get fresh air and have some sort of social interaction besides all you caregivers. Don’t keep them cooped up in the house because you’re embarrassed by their mood swings and personality changes.
Get them out for some Vitamin D and a walk.
Now some may not want to go out for a walk or leave the house. My father was like that. Take them out to the backyard, patio, deck, whatever if you can just to give them a new view!
Or maybe just put them in the car and go for a nice drive. It doesn’t have to be anything fancy or elaborate. Just get them outside.
5 Ensure safety in the home. In the middle to later stages of the dementia behaviors, your parent may try to wander. If your parent is already doing this it’s crucial to have in-home care over night to prevent them leaving the house.
It could be a warning sign that it’s time to go into long-term care as well. Remember we can’t do everything.
Also make sure to have all safety features in the home, in place. Doors locked, important papers and items placed in a safety deposit box or somewhere safe, lighters, matches, etc should all be put away.
My mom had to stay out of the kitchen because she left the stove elements on and walked away for hours almost burning the house down twice. Be aware!!!
6 Make time for you. I get that you love your parent and want only the best for them but you will be no good to them if you are burnt out, frazzled and unable to cope or function.
You need to take time for yourself. This is a difficult time and your emotional needs and mental health are just as important as your parent.
Be kind to yourself and don’t feel guilty or beat yourself up if you can’t do it all. I have a newsflash for you – you are human, not a machine.
If you are feeling low, tired, angry or frustrated, reach out to another helper and ask them to jump in for you so you can’t take a wee break.
7 Be gentle and supportive. If your parent is still in the early stages of dementia, chances are they will deny having it. Don’t argue with them and tell them “yes you have dementia”. That won’t help anyone.
Be very gentle and supportive with them, compassionate and kind. Remember they are confused about their memory loss and older people are already a little frightened about getting older and their future.
Don’t add to their fear, confusion or anger. They need love right now, not a battle of wits. Watch your tone of voice and just be loving and supportive.
8 Speak slowly and clearly. As your parent ages and as their dementia progresses, they will have a hard time keeping up with normal conversations. Try to speak slowly, clearly and don’t talk about complicated things.
Their communication skills will start deteriorating and it will be frustrating, and it may even anger them, to not be able to hold a regular conversation like they used to.
Talk to them like you’re talking to a child. Kind of.
9 Watch their behavioral changes. Make sure you keep a note or a list of all the behavioral changes your parent is going through. It’s important that everyone know how their condition is changing or getting worse.
Be aware of drastic changes like mood swings, minimal, or lack of, eye contact, sleep problems, facial expressions (angry, sad, depressed, etc) and even body language. As they get further into dementia they may start being aggressive physically.
Remember, they don’t mean to. They don’t know what’s happening to them.
If the home environment is no longer a safe place for them, it may be time to look into a long-term care facility.
10 Keep changes to a minimal. They will notice changes. If they are used to a chair being in a certain place and you move it, it will upset them and confuse them. If you’re going to make any changes to their wardrobe or house, keep them really minimal.
I remember one time my mom came over to my house for a visit and to give my dad a break and I painted her nails for her. The next day my sister told me the nails really upset my mom and she had to remove the nail polish immediately.
What may seem little to you is huge to them. Be careful.
5 Things You Should Never Do to Your Parent
I get that this is a super difficult, frustrating and confusing time for you but you can stop for one minute and imagine how your parent must feel? They are 10 times more confused and frustrated than you are and throw in angry too.
Quite the mix.
It’s not easy to care for a parent with dementia and you may feel like losing your s**t every now and then. I get it. But please don’t.
You will feel so guilty and your parent will cry and cry and feel so bad. It’s a horrible situation for everyone involved but it’s up to you to maintain it as best as possible.
Here are 5 things you should never do while caring for your parent with dementia.
1 Argue with them. Just please don’t. They don’t understand. It will upset them beyond belief. All you have to do is smile and nod in agreement, whether they are right or wrong doesn’t matter. At all.
2 Yell at them. Again, please don’t. They’re scared and angry that something beyond their control is happening to them. It upsets them that they forget. Their life is hard and confusing right now. Don’t yell at them. Ever. You will feel bad for doing that for a long time.
3 Make fun of them. Really? Don’t do that. Why would you poke fun at someone who is going through such a drastic change in life that it makes them borderline depressed. Compassion and kindness goes a long way. Laugh with them, not at them.
4 Force them to do something. No means no. Period. Don’t try to force them to do something they really don’t want to do. Even bathing. My dad refused so I let him be and then every now and then I would gently suggest he wash. Make it sound like it’s their idea and it’s a good one!
5 Ignore them or their feelings. Remember, they still have feelings. You still need to respect their feelings. If they’re talking to you, even if it’s about something they’ve already told you a million times, listen again. It matters to them.
Caring For a Parent With Dementia is Not Easy
Listen, this is going to be new to you. It was new to everyone at one time. No one knows how to care for a parent with dementia and each case is different. I think doing research and learning as much as you can is the best thing you can do right now.
Being the primary caregiver is a tough job but remember you don’t have to do this alone. People truly do want to help. Just ask.
There will be many days you will cry and breakdown. You will have days when you hate your parent and you wish they would die. I’m not joking and there’s no shame in that.
You’re human and you’re going through some really tough times right now. You aren’t trained to do this. You are learning as you go. Be gentle with yourself.
You’re doing a great job!
If you have any other tips on how to care for a parent with dementia please share them down below with the other readers. Remember, sharing is caring.
ox iva xo