This is a different blog from normal, as I ask you for your take on a situation that I recently experienced. I’m not sure if I’m going mad or whether they’re just crazy. It’s difficult sometimes as I’m in my own head a lot. I question myself, going over things, especially as it’s just usually me and Mum, so I don’t always get the feedback that I need. I’m wondering if I’m reacting in the right way this time as a dementia caregiver?
Mum spent Eid with her extended family to celebrate the end of Ramadan. Families and relatives all come together for prayers and then celebrate with an enormous meal. It’s joyous and lovely time, surrounded by her closest family members, all their kids and of course the foods she loves to eat! Think of it like Christmas day.
After lunch, everyone was offered sweet treats, and Mum chose a chocolate sweet. She put it in her mouth and began to choke. Everyone panicked as Mum struggled to breathe. They went into a state of shock, and nobody moved. Thank goodness, my uncle had just entered the room and saw what was going on and sprang into action. I don’t know what he did, but whatever it was, it worked and Mum was able to breathe again. Then everyone reacted and rushed to Mum to see if she was ok.
After the scare, they brought Mum home, but it wasn’t until much later in the evening that a relative pulled me aside and said
“I need to tell you something, but you need to promise not to tell anyone” in a hushed tone. I didn’t understand why, but agreed.
“Your mother choked on a piece of chocolate and couldn’t breathe; no-one knew what to do. Everyone froze. It was only thanks to your uncle who just walked in, and reacted quickly enough to help her”
I couldn’t believe it. My heart dropped. I rushed to Mum to check she was alright. Then I absorbed what had happened. Why didn’t anyone help her? I was angry, shocked that no-one reacted, but grateful that my uncle walked in at that moment.
I said, “Why didn’t anyone tell me straightaway? Why did you say to keep it secret for god’s sake!”
My cousin hesitated, looking guilty said, “They were afraid it would upset you,” he admitted. “They didn’t want to cause you any more worry, especially with everything you already do for your mother.”
I was confused. Why would that upset, and surely, it’s important to know of health issues for my Mum? My cousin said their intention was to try to protect me from further stress. That doesn’t make sense to me. I need to know information like that so I can be wary of that food type or, if need be, raise it with Mum’s doctor or her SALT team. I felt betrayed and angry at the thought that they could withhold such crucial information.
My cousin said, “I thought you needed to know. That’s why I’m telling you”
Too bloody right. I needed to know. Am I going mad? Isn’t it obvious that I needed to know? I appreciate their concern, but it wasn’t their decision to make, especially as I deal with emergencies day after day.
All this has done is leave me with a sense of distrust and worry that information about Mum’s welfare can be withheld from me in the future.
I honestly don’t get it. Surely, I needed to know this information so that I’m forewarned. What do you think? Am I going mad?
Were they right to withhold or should they have told me, let me know in the comments, I would appreciate some feedback on this!
Til next week!
Top 8 Must-Have Kitchen Appliances for Safer Cooking with Dementia
Celebrating Dementia Caregivers: Wine, Women, & Dementia
How To Wash Hair Sitting In A Chair Without A Sink – Dementia Caregivers
The Power of Connection in Dementia Care
Carer’s Allowance Overpayments -Don’t Blame Unpaid Carers!
Trust the Experts?
Am I A Nurse Or A Dementia Caregiver?
Admiral Nurse Helpline: Support for Dementia Care
24 Eye-Opening Truths About Being a Dementia Caregiver
Caring For A Loved One With Dementia During Ramadan
12 Dementia Repetitive Questions and Ways To Respond
Strategies for Handling Repetitive Questions for Dementia Caregivers
Why Does My Mum With Alzheimer’s Keep Repeating Herself?
The Emotional Response Matters
Why I hate Indwelling Catheters! – Dementia Caregivers
12 Tips to Ease & Prevent Dementia Anxiety and Agitation for Caregivers
Perceptions of Dementia
11 Visual Art Activities for Late Stage Dementia
You should have been told immediately and it definitely should not have been treated like some big secret that needed keeping from you. I’d have been angry as well.
Thank goodness, that’s what I thought, very weird that they thought to not tell me! Thanks for replying.
I can understand them holding back to not worry you. But as you are her main carer you need to know.
Whenever your mum has time like this again with family, maybe before the day, or to one side with someone
on the day, just say that any problems, I need to know so that I have appropriate information to pass onto the professional carers that come in to check on her. I need to know in case any changes need to be made in the way I care for her.
Thank you, you need to know to maintain proper care, but I like you advice to take them aside, I thought it was enough to remind them of mum’s dysphagia, to provide thickener to help her eat and drink would be enough to remind them that mum was likely to cough and struggle with swallowing. Next time, I’ll be more explicit! Thanks again for your feedback
Of course you should be told, how can you care if you don’t know potential problems.
Keep strong and trust yourself to know what is right.
Thanks Jenny, that’s the thing, if I don’t know then I can’t watch out for it. Glad to see that I’m not going crazy!
I think it was because they were embarrassed they didn’t know what to do in that situation. It was a reminder of mortality at a happy family occasion. It’s really upsetting for someone to see someone else choking. I know it is for the person as well but there is an helplessness on all sides. Especially if you don’t know what to do, and it’s also really hard to make an intervention. Even with training it’s not anything like it is when you practise in a first aid class or in the movies. Yes you need to know, as it may indicate a change in diet is needed but often it can happen whatever the consistency of a meal or drink when there’s a swallowing issue. We deal with this daily so you get used to it and I know I’m more worried than Mark most times. You’re not going mad either. I just think it’s families weighing up what best to tell you when they weren’t sure what to say and how.
Thanks Katy, that puts a different perspective on it. I can see it would be very upsetting and maybe they were embarrassed as they haven’t witnessed mum really choking before especially with all the family there. It is still sad that they didn’t react to help her, that’s the bit that concerns me, like you I’m always terrified when mum has a coughing fit or struggles to breathe after eating something but i’m more experienced in reacting to this type of stuff from day to day caring. Thanks for giving me another way to look at this, this is why I told them all to do a first aid training course so they at least have some idea of what to do, maybe that’s where the embarrassment lies.
Morning Kat.
First of all, you are 100% in the right. This should never have been withheld from you. Thank goodness your cousin had the decency to tell you. It’s ludicrous to keep important information like that from a main caregiver. Secondly, it’s very worrying that only one person in a large group was able to react in time to prevent serious harm. There are many videos online (YouTube etc) that show you how to deal with a choking incident. I think I would be tempted to find one and email it to everyone (quite a blunt approach but too important to pussyfoot around). If they can’t be open with you about your Mum, how can you put your trust in them next time? It would be such a shame if her social contact suffered because of their misplaced protection of you. I’m sure none of them meant any harm at all by their silence, they just need to know it’s inappropriate. I hope your Mum wasn’t too frightened by the whole experience. M-L x
Thank you Mairi-Louise, I’m seeing it with fresh eyes thanks to the responses to this blog. I thought it was common sense to share it, but when my cousin said I had to keep it a secret, that seems ludicrous to me. The lack of reaction is a major concern as well, thank you for the idea of the youtube video. I will do that and also remind them again that its worth doing a first aid course, mum is going to face more incidents I’m sure, hopefully they’ll get it otherwise I’m always going to be worried and will probably go with her just to be sure rather than taking that time for respite.