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What happens when your parent gets diagnosed with dementia

Ktynan

Registered User
May 22, 2014
20
Because sharing is caring. Today I'm having one of the bad days, and not coping well, so though writing something down would help.


My mum was diagnosed with dementia earlier this year at the young age of 62. My initial reaction was oddly, relief. Something had been wrong for a long time and it felt good to have a name. I decided I was going to deal with this then and told all my close friends immediately so that it was out there. I told them that getting a diagnosis was good as it meant we could get the support she needs and could understand her better. I thought the worst was over and now we had the diagnosis things would only get better. Little did I know I was very much in denial.

When your parent is sick your whole life changes. There are many days that just float by and you get on with your new role of carer to your parent. You are calm, compassionate and ensure your parents initial needs are always met. You think of how wonderful your parent has been all your life, how lucky you were to have those years. You feel like you're doing ok for them, that they are safe and feel loved. Then there are the other days. The days when you feel like you're drowning. You think of your friends and the security their parents still give them. You think of all the firsts your parent won't fully partake in, graduations, weddings, grandchildren. You wonder how your life took this turn, this isn't the way things are supposed to be. You feel like you can't cope. All those friends and family members that promised you could always talk to them feel a million miles away. You couldn't share how you really felt anyway. How you often find yourself shouting out of frustration, crying tears of hurt and lack of understanding. Then comes the worst part of these days, the guilt. You shouldn't be making this about you, your parents have sacrificed everything for you so why can't you for them? You shouldn't have been so angry and should have just reminded them that they are loved. You find it too painful on these days to share with others how you feel. You know they'll jump in with the loving "you're so strong" "you're so compassionate". Hearing this makes you feel sick to your stomach with guilt as you've been non of those things. It's these days that you feel the most alone and just want your sick parent to reassure you that you're doing good enough.

Nobody tells you what you're supposed to do when you are told your parent is sick. There is no handbook on how to deal with all your emotions whilst caring for a parent. Nobody tells you how to fight the isolation. Nobody tells you that it's ok to hurt, and cry and share. Nobody tells you how to love a sick parent, you have to learn these things for yourself.

But there are the good days, and that is something to be thankful for. There are the days your parent makes 'normal' conversation with you. There are the days they say how proud of you they are. There are the days when they remember to tell you they love you before bed. There are the days you see them briefly smile, or hear them laugh. There are the days that you see the a glimpse of who they used to be, before they were a diagnosis. These days are bittersweet. You realise how much they have taught you through thierillness. The true value of unconditional love.
 

flowerball1

Registered User
Jan 16, 2014
18
Well put, I could not have expressed it better myself. I think the isolation we all often feel is the worst. I used to think there is a whole world of people out there with lives, living them, allowed to be happy and having the freedom to just be....Then I would have a look at Talking Point and realise that I wasn't actually alone in contending with this horrible disease, there were lots of us screaming quietly (or sometimes quite loudly) in despair. But as you say, there are also the good times and I hold on to those tightly and cherish them... and have a good scream into the nearest cushion.

I hope tomorrow is better... if not.. grab a cushion!
 

Lyncus

Registered User
Oct 30, 2014
16
Warwickshire
Very well put. I feel like I am drowning too today. I have been caring along with my sister on a daily basis for three years. My father passed away 8 weeks ago who had been bedridden through a severe stroke he had 18 years ago and had carers in with myself and sister going down as mentioned to look after mum and dad. Mum has declined over the past three years to the point she can not do anything domestic in the house, and is now at the point where she won't wash without assistance and having a conversation with her I find exhausting as it goes from one bizarre subject to another or she misinterprets everything you say to her. Mum has been living with me since dad passed away and the 8 weeks have made me feel very isolated and burdened with moms illness. Like you I feel extremely guilty about how I feel and react to her, I feel resentful because no one in the family has bothered with her. I feel like I have been left holding the baby. I feel like she is alien to me how awful is that to feel about your own mother. We are trying to get a good care package together to reinstate her back at home, with again myself and my sister going in daily. I am not sure it will work or for how long before we have to bite the bullet and take her into our home or a care home. I have been very naive over the past 3 years and didn't realise how serious this disease can become when at stage 7, I can't even bare thinking about mum getting to stage 7. Sorry I have waffled on and taken over your thread, but I am glad I have found TP with people in the same boat. Good luck
 

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