Gail’s Dementia Diary – When you see both sides

Hi, it’s Gail,

This chapter is not an easy one, not when you can see both sides.

Oh my word this is a tough watch from the outside in. My heart is ripped in two, my Mum the carer and my Dad being taken from dementia and me, well I’m dealing with my own sidekick whom I’m trying to keep at bay while I’m calmly speaking to a very confused Dad whose dementia is mixing everything up leaving my Dad in a mega state of confusion.

My Mum, she’s desperate for a break, because the clutches of dementia that have now messed with my Dad’s thoughts causing him much confusion, agitation and mood swings. Dementia is taking over her husband more and more only giving him brief moments of the man that she married.

Dementia is a nasty thief, it takes bits of you piece by piece. From a very caring man who would work so hard, always pottering, mending and fixing to a man who’s become so needy, suspicious, angry and confused.

The husband, Dad, Grandad and Great Grandad now needing twenty four hour care and attention.

We do still have brief moments though of laughter, when my Dad is calm and we reminisce about the funnier moments, but these moments are very few and far between now.

Those that have never had to deal with dementia have no idea what the person, the family and the main carer goes through. It is twenty four hours a day and people don’t see the difficulties that dementia brings and how it wears and weakens the person that’s caring. It doesn’t matter if you’re the wife, the husband, the son, the daughter, the friend, as a carer dementia will eventually wear you down too.

I’m now seeing this chapter from both sides from the person living with and the person watching a loved one in the end stages and I always try to remain positive but this is getting so difficult, I’m not accepting these end stages of this disease because this stage sucks, it really sucks!

I openly admit that I am finding it a tough watch and I’m now finding it tough to live with.

It’s not just the end stages of dementia that preys on my mind but it’s the lack of respectful, compassionate care. Watching how my Dad was treated in a care home while he was receiving respite, how they spoke to him, the lack of listening skills, the lack of empathy, the lack of education and the lack of knowledge about the person.

Some just think it’s acceptable to ignore and put off simple requests like thirst and pain. Even the lack of conversation or how they communicate is just so undermining. Just to give a person just a little bit of attention, just a little conversation, just to be respected and acknowledged would make a huge difference. Because when that person gets agitated, there could be an underlying problem like bed sores.

Have you ever experienced bed sores? because they are very painful to a person living with dementia and they might be confused and might not be able to describe the pain and yes they will call out and they will groan and they will shout. They’re not being aggressive, they’re in pain.

My Dad endured the pain of bed sores without any treatment for four, nearly five days, the care home just fobbed him off and ignored him until he was due to come home and then they told me that there would be a District Nurse to come and see to them.

Yes, they was reported by my daughter, twice and I had spoken to a member of staff over the phone on several occasions. My dad even waited an hour and a half for a cup of coffee. He said he was thirsty, and my daughter witnessed this so the day after she took a flask of coffee into the care home so my Dad could enjoy a cup of coffee when he needed to.

It’s simple things that don’t take too much time and they can make your life easier in the long run if you think about it.

I tell you something, my fear of the end stages of dementia and my fear of care homes, and my fear of how people will treat me has just been made worse.

This chapter is not an easy one to be part of.

Thank you for listening, bye.