Yesterday would have been your birthday.
You would have been 96 then.
I miss you Beppe.
I really, really miss you.
Like ChickenRuby, I’ve been bitten, pinched, hit, spat on, kicked and called names (being called a Nazi really hurt my feelings and made me cry). Most of the times by the person suffering from dementia, sometimes by a family member of the client.
Family members tend to think they know their relative better than we do. But we see their relative every day, for hours. We see that they are getting worse, that they forget more and more. Most clients have a tendency to act better when their relatives are around. But when they leave, the clients gets back to its normal self. The one that (in many cases) can’t perform even simple tasks.
For families this is very hard to understand. I once cared for a woman who, physically, was fine. But mentally she knew nothing. Yet she wanted to go out, walk around the village, go to the harbour. Her daughter thought that was fine and was very angry when I told her I couldn’t let her mother go out unless someone was with her.
Mind you, she’d got lost quite a few times before. Luckily, in a small community everyone knew her and brought her back, but the ordeal made her get worse every time.
Or the gentleman who thought he could still drive his car around. One time, when I went home, I got stuck behind him. I was waiting for the traffic light to turn green when he suddenly overtook me (wrong side of the road) and drove through the red light, almost hitting a few cyclists. I got stuck behind him for 10 kilometers. Couldn’t get past him at all. He swerved from one side to the other, breaking randomly and going 50 KM/H instead of 80. It was dangerous.
I talked about this with my manager and coworkers and the advice was given to his children that they’d sell off the car. One agreed, the other one didn’t. So the car stayed. We called it in with the police, they came around and talked to the man, but he flat-out refused to give up his car or his driver’s license. In the end we had to call the police whenever we saw him leave and hope that he wouldn’t cause an accident.
Of course it’s hard acknowledge that your relative can’t do what they used to do. They slowly travel back in time further and further. Until, finally, their body gives up and they die. And that’s hard. But don’t ignore the signs, don’t ignore the people who care for them. They know what they’re talking about, they know your relative better than you do, really.
Dealing with dementia is like dealing with a child with special needs. They don’t see what consequences their behaviour might have. They simply don’t know. They tend to think they can do whatever they always did, but that time has passed.
And that’s hard. On the client and on the family.
Cartoon by TeddyTietz
When my grandmother went to a carehome my dad got asked to make a lifebook for her. She was diagnosed with Alzheimer’s’ and the book would be a great way for staff to get to know her a bit better. And for her to look back on her life.
I’m writing this blog post in hopes to help people who are looking into making such a book for their relative.
What would be included in a lifebook?
Why is all this important?
The full name and preferred would be already in the files of the nursing home where your relative is staying. But sometimes your relative will only listen to a pet name from their childhood. Many times that name is not recorded in the files. Make sure you included that name.
Date of birth and place of birth should, again, be in the files. But sometimes it’s hard to find out the exact place of birth. Maybe the village doesn’t exist anymore. Or maybe the records don’t show the right place of birth (it happens).
Photos and names of other family members are important. A person with Alzheimer’s travels back in time. They’ll start asking about people who have long since died. It’s nice to have photos and names at hand. A family tree will come handy for carers, as they can see how people relate to your relative.
Schooldays are a really important part of a person’s life. Teachers have probably had a great impact on a person’s life. Photos will bring your relative back to those days.
One of the most important days of your life. That’s how almost everyone describes their wedding day. Almost anyone has at least one picture of their wedding day. Makes sure not only to include pictures from the spouse (if not alive anymore) later on in life. They won’t recognize them anymore. Harsh but true. But they’ll know that boy in the soldier uniform or the lovely girl in the long dress is the person they are going to get married to. These picture are very important.
As for the children. If you are visiting and you tell your mother/father you are his/her daughter or son, it might happen that they don’t remember you. This will hurt, a lot. Talk to the carers about it. You’ll find they are talking about you when you’re not around. They see you as the little boy/girl you once were. the grown person who stands in front of them doesn’t look familiar. Although they won’t mind a cuddle, as they somehow know you are close to them. How they know? They have no idea, but they feel love if you’re around.
Include photos of much-loved houses your relative has lived in. Have they moved like a 100 times in their life? What would they choose as the most important place they lived in. Think the house they bought when they first got married, the house the children were born in. The house the last lived in.
Pets are a very important part of life. Don’t think about the guard dog that wasn’t allowed in the house, think of the cat whose kittens were born in front of the stove in the kitchen. Think of the lamb that had to be bottle fed every few hours. Those are the important ones.
anecdotes, things your relative might suddenly start talking about. My grandmother suddenly started talking about a family where she had worked when she was about 14. Nobody remembered anything about that family, only her youngest sister did. She shed some light on my grandmother’s behaviour when she talked about this family. This family had a massive (negative) influence on her. She hadn’t talked about them for over 70 years, but she remembered.
I think you’ve now got a pretty good picture of the important things that might help your relative to remember. And help the carers to care for your relative even more.
I can’t do this alone. Who can help me?
Ask help from friends and family. As I stated above, asking your aunts and uncles is a great way to find anecdotes from their childhood. Things they might have never talked about. Ask the nursing home if other families have made lifebooks. Ask them if you can view those for ideas. Nowadays you can make great photo books online. Use those services to your advantage.
Maybe there are volunteers in your local area who can help you. Or maybe there are organisations that can help. Don’t be afraid to ask for help. A lifebook isn’t something easy to make. It’s hard.
If you think you’re done, ask someone to go over your work. Ask them for input. It’s easy to include too much information. Maybe you’ve included stories that are important to you, but aren’t so much to your relative.
Is it really worth it to include negative parts of my relative’s life?
Yes, it is! Negative events are just as important as positive events. Let me tell you a short story.
In a nursing home where I worked was a woman who had severe dementia. The last few weeks of her life, when she was in bed, she was screaming and crying. The only thing we could understand were the words: “Don’t take him, don’t take him.” We had no idea what triggered this. And the only way to get her quiet was to give her a babydoll. When she didn’t have the babydoll in bed with her she would try to get out. We found her on the floor, on her hands and knees more than once, trying to get her babydoll.
We asked her daughters, she had 3 girls, what she might be talking about. They had no idea and didn’t ask other family members for clues, despite us asking them to do so.
After the woman died, her brother dropped a bombshell on her daughters. It turned out that she had gotten pregnant when she was just 15 and had a baby boy in a home. That boy had been taken away from her right after birth. She had never spoken of this. Right until she died. When one of her daughters told us this news, we could finally understand her erratic behaviour towards the babydoll, who was, coincidentally, dressed in a blue jumper.
If the daughters had asked their uncle if he could shed some light on the womans behaviour this story would have reached us much sooner and we could have made sure she had that babydoll with her at all times. We might have been able to give it a name with her, making her feel more comfortable with this sad story. Sadly they didn’t and we tried to get that doll away from her on multiple occasions, for example when we needed to wash her or give her food. Which made her even more upset without us knowing.
So yes, negative details of someone life are important. Of course you don’t want the whole book to become negative, so don’t include too much.
I really hope this will help you make that lifebook for your relative. If you have tips, don’t be afraid to share them in the comments. I’d love to get as much feedback and tips as possible!
This post has been inspired by yesterdays Daily Prompt.