Dealing with Guilt

[jojo1712]

My Dad has been diagnosed with vascular dementia, 2.5 years now. Mum has been caring for him but everything has spiralled down this last week. He has had some health complications. Sent to hospital and my mum has said she can no longer care for him. He is barely there anymore (in his head) visiting hostial every day but he knows us all less and less. I feel bereft. I love my Dad and want him back, he has to ask who I am and who my children are. Then we say 'Love you lots like Jelly Tots' . He hugs me and calls me back and says 'Jelly Tots' . I am heartbroken. I dont know how to deal with this. I want to be strong. I love my Dad so much. Its like someone passing away, but glimmers of hope, then crashed to the floor. I am so down, Im sure my mum is upset and I dont know how to cope.
Im neglecting my husband and children, I come home from hospital ever day, crying and sad, and I dont know how to get out of this behaviour.
Ive a day off from hospital tomorrow, as I need to help my 16 year old get prepared for 6th form. But I feel so sad. I dont know how to stop feeling this way or how to help my mum or Dad.

 

[karaokePete]

Hello @jojo1712 , you are welcome here and I hope you find the forum to be a friendly and supportive place.

When someone is diagnosed it’s normal for them and their family to feel a grief response, known as anticipatory grief and this may be what you are still experiencing. Don’t be afraid to seek help from your GP as something like counselling is often found to be of benefit.

It may also help to talk to the help line experts and the details are as follows

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Beyond that do keep posting as the members here understand.

 

[Izzy]

Good morning @jojo1712 and welcome to the forum.

I'm sorry to read about your dad and can understand your sadness. I too think a visit to your GP might be a good way forward. In the meantime keep posting here. There's always someone around to listen and understand how you must feel.

 

[Tinkertaylor]

Hi Joanne, firstly let me say how sorry I am, I can totally understand how your feeling as I am going through the same situation as we speak. My mum was only diagnosed recently and we’ve been told she is too confused already to get a proper diagnosis but she’s already in the later stages, she has other health problems and my dad just couldn’t cope at home with my mum so she was taken into hospital only 3 weeks ago and since then she has deteriorated rapidly, this has hit us all like a brick wall and I’m struggling to even visit as I get so upset seeing my once very happy and loving mum, in this unrecognisable state. She looks so scared and some days she knows who I am and others she doesn’t, she squeezes my hand and just doesn’t want me to go, it’s breaking my heart and I too just go back to my family and break down in tears. As a mum of 3 kids myself, I feel I have to stay strong in front of them and I work full time and I’m absolutely exhausted. We’ve been told it’s only a matter of time so I feel like I need to spend as much time as I can visiting her even though she doesn’t know I’m there most of the time, and supporting my poor dad who’s also exhausted and like you, I’m neglecting my family and that’s causing problems in itself. So very hard.

 

[Izzy]

Welcome to the forum @Tinkertaylor. Thinking of you too.

 

[LynneMcV]

Hi @jojo1712 I am sorry to hear of your dad's diagnosis and recent decline.

Your post struck a chord with me because my husband would always beam a great big smile or laugh loudly with delight whenever our adult daughter told him "love you lots like jelly tots"

It is such a hard time for you all - mum as his carer, you split between caring for your family and being there for dad and helping support mum, all the while aware of how quickly things are changing and there is nothing anyone can do to stop it and turn back time.

With your dad in hospital your mum has had time to breathe again and think about how she will cope going forward. If she has said she can no longer care for him it won't have been an easy decision and it will help her immensely to know that you understand and support her.

Maybe what she will need is support from carers coming to the home - maybe your dad will thrive better in a care home. In neither case is there anything to feel guilty about - but don't we as family always feel that way - that somehow we have let our loved one down and could have done more!

Try to push by that guilt, and help mum push by it too. Neither of you are guilty of anything other than wanting the best for your dad. There is no shame in admitting that you might need others to be involved in that care too - it isn't about giving over care to others - but more about finding the right level of support to help you and mum care for dad in different ways going forward.

 

[karaokePete]

Hello @Tinkertaylor, welcome to the forum. I look forward to seeing you posting here as you will get support.

Know that whilst your mum may have lost some powers of recognition and expression, emotions are still felt by a person with dementia to the very end. When she squeezes your hand she knows the love bond between you.

 

[Babymare01]

Hello there and welcome. Guilt! That emotion we feel so much. My guilt is I wish my mum would quietly go to sleep and never wake up. Am I bad for thinking that? No no no because I wish it for the right reason. To release my mum - and yes me - from this awful illness. But it still doesn't stop it bashng my head.
Please trust that you are strong but none of us can cope 110% all the time. You are allowed tears. Your are allowed to say "Im struggling" and this forum is the place to feel comfortable saying that because we have all been there and understand.
What you must remember is you are important and need time off. You must allow yourself time to step back from visiting. Not just for you but your family. Would your dad want you to make yourself ill? Please please go and talk to your doctor. Talk about what help you and your mum could get but most of all be kind to yourself. You are a loving caring person.
And remember you are not alone. We may not be by your side in person but we are all there with you.
A big big hug x

 

[Tinkertaylor]

Thank you your words mean a lot, it’s all happened so quickly so we haven’t had time to even think about what is actually happening.

 

[hilaryd]

Best wishes to you both, @Tinkertaylor and @jojo1712. It's so heartbreaking to see people change and deteriorate, and easy to feel guilty amidst the sadness, but there's really nothing to feel guilty about - the fact that you're trying to do your best for your parents says it all - you care and you love them. Dealing with dementia is really being thrown in at the deep end and having to deal with all kinds of new problems and feelings for the first time - personally I found this forum the absolute best place to get help and support from people who really understand, who have practical ideas and experiences to share, and who never judge, but only offer kindness. You're doing a good job already, but the TP people will support you when you struggle with it.

 

[Gilly1952]

I'm so sorry to hear about your Dad Jojo1712. I can understand how you feel. My husband was diagnosed with vascular dementia just over a year ago, after 6 months of tests and scans. Although with the benefit of hindsight, I think he had probably been hiding that he was suffering for a couple of years before I managed to persuade him to go to the GP. Initially it was just his short term memory that was a problem but he has quickly progressed to becoming confused, agitated, occasionally depressed, occasionally angry. In the last 2 weeks he seems to have deteriorated a bit more - we went into the local town on Saturday and long story short I lost him, not once but three times within the space of a couple of hours. Fortunately he was wearing his GPS tracker (worth its weight in gold!) but it's like taking a toddler shopping. Every time I took my eyes off him he wandered off, On the third occasion he became really frightened and distressed and burst into tears when I finally caught up with him. Until now I have been able to go out and leave him at home for a few hours and be fairly confident that he will be safe, but this is starting to change. The person I know is disappearing fast and whereas to begin with I thought I could take it all in my stride and manage I am starting to feel tearful and overwhelmed by thoughts of what the future holds for him (and me). It all seems to be happening too fast.
I hope your Mum finds some comfort in your loving support. It's a cruel illness and it affects not only the sufferer but everyone who loves them. The guilt feeling is terrible - I worry constantly whether I am doing the right things or doing enough to support/care for my husband. I think it's an emotion that every carer can identify with and forums like this can hopefully help us all to cope.