I’ve lost my grandma this year because of Alzheimer’s disease. We never had anyone with Alzheimer’s in the family before so it was a totally new experience for us and also painful.
I grew up at the countryside with my grandparents constantly around and I was very close to them. So I thought I should share a few things I learned during this time that maybe it will help you or anyone that is dealing with this type of Dementia.
Before going further with the reading I want to warn you of a few things:
This might be a long post as I’m trying to write as many things as I can in order to help others going through the same situation or wanting to know about Alzheimer’s and Dementia.
It might not be an easy read. It might affect you emotionally or bring back some sad, painful memories if you have been through this before with someone.
This is just my experience. You have to understand that even though this disease has its defined symptoms and stages, in the same time, for each person it’s different. So this is just me saying things from my perspective/experience.
So having these things said, if you’re ok and want to know more here we go…
Look For Early Signs
Since we never had Alzheimer’s in the family before and grandma being healthy and in good shape, a very active person, we didn’t get the early signs. We thought just like most people that it’s just old age.
Which is OK and normal because most of the time that’s exactly what it is…old age.
When it’s not just old age it’s tricky to get the early signs so here’s what you need to know, understand and pay attention to.
Do Your Research!
Document yourself about Alzheimer’s and Dementia.
It’s important to understand what Alzheimer’s is. Also there’s some confusion between Dementia and Alzheimer’s and they are used interchangeably.
To put it more simply Alzheimer’s is a type of dementia. It’s a degenerative brain disease.
Dementia is the name given to describe symptoms or diseases which damage the brain. There are different types of dementia. Alzheimer’s is the most common form of dementia.
It is essential for you to know what you can expect and what you’re dealing with. There is so much information on the internet and so many people sharing their experiences that can help you and prepare you.
Knowing what you’re dealing with will give you a better way to manage the situation.
It helped me in the beginning because I knew what to expect, helped me understand, prepare and recognize what was happening.
You also have to know that although there is no actual treatment available for now …you can SOMETIMES slow down the symptoms or the progression and keep it under control with the right treatment.
Also your attitude, the way you take care of them and a healthy diet/lifestyle is very important in making things a little better for them.
Stages Of Alzheimer’s
As the disease progresses it goes through different stages. Usually you’ll find there are 7 stages of Alzheimer’s. While it’s important to learn about these stages and to know what you can expect keep in mind that symptoms may vary. So does speed!
Understand that for each person it’s different. For some this disease progresses very slowly. Some live with it for 5, 10, 15, 20 years while for others everything happens fast. Within 2 years of her diagnosis my grandma was gone.
My grandma’s Alzheimer’s progressed quickly. It was like suddenly everything went bad. So those 7 stages went very fast!
It started with something simple that can be attributed to old age…like forgetting. And then things changed.
Here’s what you can expect…
Lots Of Changes
Sudden changes in mood like suddenly becoming too cheerful or sad. Bursting into laughing, crying, getting angry, saying or doing something that they don’t normally do, childish attitude.
Forgetting things, events, names, people or having a hard time remembering. Misplacing things, forgetting what they want to do, what they did, what they said or wanted to say. Changing the subject quickly or giving confused answers.
Looking disoriented, getting anxiety from normal, usual things, getting agitated especially if out of their home or going to other places.
In the beginning people that go through Alzheimer’s sense that there’s something going on with them.
My grandma used to get angry and point to her head and say it’s not working properly anymore. So she knew in a way what was happening.
And sometimes because they realize something is wrong when they say or do something weird or different than their normal behaviour they will lie or try to make it look/sound like a joke.
It’s just their defence mechanism…don’t get upset, don’t take it personally. She would also get sad and cry because she knew things are not ok. It’s very important to be there for them, calm them, maybe try to change the subject and assure them all is ok to not make things worse.
As the disease progresses other symptoms will develop.
They might become very active during the night time. They won’t sleep and won’t let you sleep either.
They will disrupt the sleep for the whole house which it’s not easy at all. They can become very active at night.
You have to be very careful because they also lose track of time, they confuse daytime with night time, mornings with evenings, days of the week, time of the year, etc.
My grandma would nap for some time and then after waking up she thought it’s morning and started her morning routine.
One thing that might help is to keep them active during the day if you can. Not let them sleep. It sounds bad not letting them take a nap during the day but it might help them sleep at night and you! It won’t work for everyone but you can try. Please don’t get this the wrong way.
Rest is very important! It depends on each person so please pay attention to that person’s needs. If they need rest…let them rest.
They can become very agitated, restless and they might leave home. So make sure they won’t get lost.
For example they might say they want to go to the supermarket to buy something. If you let them go alone, they might get lost because they don’t know how to get there anymore or if they do get there they might not remember how to get back home.
Hallucinations And Fear
They get scared, some will experience a constant fear. They don’t recognize noises anymore or parts of their home or people as their condition progresses. They will also confuse people and family members.
For family members this can be very hard and frustrating.
They might also start having hallucinations saying for example that there’s someone there, pointing to that place. They might be afraid to be alone.
They will think that there’s someone in the house and can also think YOU are a stranger or a thief in the house. At night it’s best to leave a light on if you can. It will help them see more clearly and feel safe.
Acting Like A Kid
People dealing with Alzheimer’s tend to forget recent things but will remember and talk about their childhood and younger years. They might also start having a childlike attitude.
For each person it’s different. Some will get violent while others are very calm. Some will alternate.
They might start saying things you never heard them saying before, being mean or brutally honest. Your attitude towards them is also vital especially in those bad moments when they might not recognize you or start saying bad words to you, cursing you or even worse… hit you.
As hard as it might be don’t let this affect you too much. It’s just the disease! They are not aware anymore of what they are doing and they don’t know they are hurting you.
Food And Hydration Is Essential
They might forget to eat and drink properly. So it’s very important to make sure they get their nutrients.
Understand Their New “Hobbies/Habits” And Be Kind With Them
People suffering from Alzheimer’s will start doing all sort of crazy things.
One very common thing in people with Alzheimer’s is destroying things. They will start destroying pretty much everything around… bed sheets, clothes, things around the house. They will rip them, cut them, fold them, hide them, etc. They just don’t realize what they are doing.
The exact reason for this type of behaviour is not yet fully understood. It can be that the person is very active and constantly trying to do something. It might be their way of releasing the tension, stress, fear and anxiety from the disease.
Or just frustration.
They might get bored during the day and start destroying something which is why I mentioned earlier to try to keep them active if you can. Some will also hide things around the house so make sure you won’t leave anything valuable or important around them.
Things You Should Keep In Mind When It Comes To People With Alzheimer’s Destroying Things
1. For SOME of them it’s just a way of releasing pressure so in a way it’s good for them. It keeps them busy, it keeps them calm and also active in a way. So… IF their new habits are not that bad and are not dangerous for them… you can let them do their thing.
For example one of the things my grandma did was to rip off clothes or bed sheets with her hands and make dolls out of them. Of course it’s not easy to constantly replace the bed sheets only to have them destroyed in a few hours but…it would somehow help her and make her feel ok.
It helps if you have some old clothes or bed sheets to give them or just buy cheap ones if you can.
If it’s possible just buy some SAFE toys, something to keep them occupied so they won’t destroy things around the house.
Like I said…for each person it’s different so test out and see what works.
2. Take everything that can be dangerous from them and out of their way. Anything that is sharp, all the kitchen tools, knives, scissors, glasses and all…just take them away. You don’t want them to get hurt. It won’t stop them from destroying things but it might protect them from getting hurt.
3. Your patience will be tested. Your tendency might be to tell them that it’s not ok what they are doing and try to stop them, even fight with them. You won’t be able to reason with them! It won’t work. They can’t understand what you’re saying anymore and it will only make things worse by agitating them.
Instead what you can do is understand their new habits, make sure they are somehow safe ( like I said above take everything dangerous out of their way) and calmly reassure them that everything is ok. That you are there to help!
4. Identifying common triggers for their behaviour might help. Try to pay attention to what happens when they start behaving in a certain way. Maybe it’s something that they hear, see, what another person says or does, maybe they feel uncomfortable, they are in pain, afraid, etc.
5. Watch for your safety. Some people suffering from Alzheimer’s can become violent. They are unpredictable.
Not only that they won’t recognize you or think you’re someone else and say bad words to you but they might also hit you or throw something at you. So please be very careful. Not all people get violent but some do.
They don’t know what they are doing. For example you might try to help them and they might think you’re trying to hurt them and start hitting you especially if they don’t recognize who you are.
The Right Environment Helps!
If it’s possible allow them to stay in their own home and the environment that they know. They will feel more comfortable and safe. A new place and people might scare them and make things worse.
If it’s not possible make sure that wherever they are they are being taken care of.
As you might have guessed it by now things will get worse as the days go by. The disease will progress and some get to a point where they won’t be able to walk properly, talk, eat, won’t recognize people anymore, etc. How long it will take it depends on each person.
A Few Words Of Wisdom For The Family To Keep In Mind
It’s hard, painful, and traumatic. This is the truth!
Everything happens under your eyes and there’s not much you can do to stop it. You can only make the experience a little less painful if you can.
It’s very traumatic for the person going through it but also for those around. Loved ones, family members, friends …they all experience it differently so please be kind and understanding to one another.
Please understand that we’re all different, we feel and react differently. We’re at different levels in life. For one person it might be easier to get through the situation while for another it can be quite painful and traumatic.
For each family member or person connected to the situation things are different!
While a person reacts in a calm way and intuitively knows what to do and how to handle the situation another one might have a hard time dealing with it emotionally or might be a more sensitive person.
Some will know how to react or what to do while others don’t know or they are scared. Also people have different abilities when it comes to adjusting to difficult situations.
While others can adjust immediately some are having a hard time understanding what is happening, or even refuse at the beginning to accept what is going on.
Even if you have the ability to understand the disease or if you’re a very strong person and somehow make some sort of peace with it …at some level it’s still painful. Some can be very strong or calm almost all the time only to fall into deep depression once the person it’s gone.
Everyone has its own way of dealing with the situation and not everyone involved is going to be on the same page.
Try not to fight but be more understanding with each other. Just because you see and understand things in a certain way doesn’t mean that others are going to see, feel, understand, experience or know what you do!
Don’t force someone to understand something that is not ready to understand.
It’s not easy when the person you love doesn’t recognize you anymore and can’t properly talk with you. You literally see the person slipping more and more every day into the unknown.
But here’s something else you should know and this is extremely important to keep in mind all the time.
Your loved one…your mother, father, grandparent, wife, husband, lover, friend etc… IS still there!
IT TRULY IS!
At the base, at the essence of their being they are still there!
I had moments when grandma didn’t recognize/remember me but it didn’t matter…you know why? Because once in a while she had a few moments of clarity when she knew or remembered me and that was more than enough for me. My grandma was still there!
Your loved one is still there, just a little different than how it used to be.
Don’t Forget To Take Care Of Yourself!
Take care of yourself! Like REALLY take care of yourself.
Dealing with or taking care of someone going through an illness can be very exhausting, physically, mentally, emotionally …it can get depressing and frustrating so make sure you take care of yourself!
If you’re alone or don’t know what to do ask for help!
I’ll say again…for each person it’s different and there are so many things related to people with Alzheimer’s so the best thing to do is learn as much as you can and see what works for you.
I hope what I wrote will help you and I wish you lots of health and strength!
If you got this far reading and have any experience with Dementia/ Alzheimer’s please share your experience or advice in the comment section below… it might help someone!