Upset

[Jezzer]

@Blodski And now I send you a message that makes no sense! My last post should have said "emotional attachment" ! but you probably realised that. So sorry. Xx

 

[Jezzer]

Yes, that seems to make sense. Thank you. x

ps @Carmar 's post is brilliant.

 

[Blodski]

ps @Carmar 's post is brilliant.

Absolutely brilliant post. So helpful to know that people understand and aren't dismissive of what we are all going through and all the feelings which are stirred up by this terrible illness. x

 

[Blodski]

Oh @Blodski, your post is so moving and I can associate so well with what you are saying. You are suffering from what is called "ambiguous" grief. This is feelings of grief and loss over the change in your relationship with both your parents and all that has meant to you through your life. The loss of your support network. This type of grief is so hard to deal with because it can leave you frozen in this state, without resolution. The person we love is still alive but the personality and circumstances of the person has changed and consequently, so has our relationship with them. It's very painful to deal with and the depth of feeling can make you feel quite ill, as you have posted. It can be very frightening to feel like that. Anticipatory grief may be there too, which is grief and loss over the impending death of a person, or grieving in advance about their death.

There is an Alzheimer's society factsheet about grief and loss that may help you understand what you are feeling and why, here is the link:-
https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_grief_loss_and_bereavement.pdf

Sadly, when we are looking after someone with dementia as their child, we have to become their parent. There is no escaping this change in the dynamic and it sounds from your post as though this is what you are struggling with the most. Where your parents have always been there for you and represent everything that is home to you, you now have to represent home for them. You can do this Blodski, because they have obviously given you a wonderful example of love and support through your life and that is your sense of home that you will be able to carry with you always, no matter what. A building or house can be a physical, temporary home, but the true home is the love we have lived in it, felt and still feel for the people who made the home for us. There is great strength to be gained from having been loved and supported like that but of course, the loss of it is correspondingly huge for you. Your Dad also must be struggling with similar feelings in a different way over the loss of his wife and life partner and that must be worrying you sick too.

You need to give yourself a little time to adjust. I was an emotional wreck when my own Mum had to go in to residential care, because I could no longer care for her on my own anymore. It was a devastating time because I had wanted her to die at home (I had moved in with her as her carer), surrounded by my love and 'home'. It was not to be and in fact my Mum has settled well in to her care home and I think it has taken me longer to deal with than it has for her. She only went in to residential nursing care in March but is now approaching her 12th year since diagnosis of Vascular Dementia. Sometimes, the terrible memory loss of dementia becomes a blessing to the person suffering from it, because they can not remember what they have lost. We do and we have to deal with that somehow inside. We become their memories for them.

The absolute best support for all you are going through is Talking Point. No matter whether day or night, there is always someone online when you need a listening ear or some support. The advice from people who have been through it themselves is invaluable and sad as it is, knowing others have gone through the same thing helps you to feel less alone.

Sending you a huge cyber hug. I know I am a complete stranger, we mostly all are here, but sometimes that's what we need, to know someone cares about our pain when the people who used to care about us know longer can in that way. If only there was someone to put an arm around us and say "it's all going to be alright". That's not always possible but in the meantime we are here when you need us.

I have edited this to add - I also live alone and have a sibling who lives some distance away.

Thank you very much for posting this - it's so accurate and exactly what I'm feeling. Are you sure you're not a mind reader?!

What I'm struggling the most is not the Dementia itself, however ironic that may sound, but the fallout from it and the monumental adjustment required in coping with the "new normal". Whereas until farily recently we used to congregate as a family in my parents' house where they had lived for over 55 years - big family roasts, playing cards round the table, nephews running round, barbeques in the sunhouse. I'm sure you get the picture! Now that's all gone and my Dad is now living alone in the bungalow and my Mum is a mile away in a care home. There's nowhwere for us all to stay together now because the bungalow isn't big enough, so when my brother visits, it's just a different set up and it's almost like two separate families - my Dad, and my Mother. That sense of "home" and one central meeting point has gone, and that's what I can't get my head around. x

 

[Jezzer]

Absolutely brilliant post. So helpful to know that people understand and aren't dismissive of what we are all going through and all the feelings which are stirred up by this terrible illness. x

Absolutely. This is the only place where I've found true understanding. Not so long ago, a new member told how their doctor had recommended TP rather than medication. That was so good to know x

 

[Blodski]

Absolutely. This is the only place where I've found true understanding. Not so long ago, a new member told how their doctor had recommended TP rather than medication. That was so good to know x

Yes - I can believe that. I have been tempted to go my doctor, but know that I would be sent away with a packet of pills. For me, I don't intuitively believe that is the answer. Much better to talk to people who actually have a practical and real understanding of Dementia and what it means to be exposed to it. I wish I had logged on earlier in this journey. I hope your day today hasn't been to bad. x

 

[Jezzer]

Yes - I can believe that. I have been tempted to go my doctor, but know that I would be sent away with a packet of pills. For me, I don't intuitively believe that is the answer. Much better to talk to people who actually have a practical and real understanding of Dementia and what it means to be exposed to it. I wish I had logged on earlier in this journey. I hope your day today hasn't been to bad. x

We are just home from visiting mum together with her sister and family who have come up from Norwich. Mum slept soundly all the time. My aunt is mum's youngest and only surviving sister and this is so hard for her as they've always been so close. At least mum looked peaceful and in no distress. This wretched illness causes so much distress. I hope you are managing to get through the day as best you can. xx

 

[Blodski]

We are just home from visiting mum together with her sister and family who have come up from Norwich. Mum slept soundly all the time. My aunt is mum's youngest and only surviving sister and this is so hard for her as they've always been so close. At least mum looked peaceful and in no distress. This wretched illness causes so much distress. I hope you are managing to get through the day as best you can. xx

Must be very difficult for your Aunt, too. Unfortunately my Mum is an only child and generally speaking we are a small family. I sometimes think it would be 'easier' to have a big family who can share the burden, but that's just fanciful thinking I guess. Good to know your Mum wasn't in distress today - it's so heart wrenching isn't it, and difficult to express exactly what it feels like. I'm going over to see my Dad tomorrow, and then onto my Mum. Hoping it won't be too overwhelming. x

 

[Jezzer]

Must be very difficult for your Aunt, too. Unfortunately my Mum is an only child and generally speaking we are a small family. I sometimes think it would be 'easier' to have a big family who can share the burden, but that's just fanciful thinking I guess. Good to know your Mum wasn't in distress today - it's so heart wrenching isn't it, and difficult to express exactly what it feels like. I'm going over to see my Dad tomorrow, and then onto my Mum. Hoping it won't be too overwhelming. x

Will be thinking about you tomorrow. Remember we are here for you. I know that sounds trite but we really are. Take care. Love Jan xx

 

[Blodski]

Will be thinking about you tomorrow. Remember we are here for you. I know that sounds trite but we really are. Take care. Love Jan xx

Thank you very much. Yes, I'm beginning to realise that (that people are here, not that it's trite!). x

 

[kindred]

I'm on the waiting list for talking therapies, but the waiting list is endless and I've already been waiting for some months, so I've more or less given up on that. I would probably end up crying for the whole session anyway. I'm very private, too, and would also find Dementia Cafes a bit challenging. I am also a worrier, and agree that it compounds the issue. When I visited her on Thursday I took a picture on my phone because she was looking so well. It's very painful looking at it, but I hope it will give me some strength. I've printed it of too.

I feel as though I am living the Dementia alongside her. It's very strange, like a parallel universe. x

Oh yes, thank you. My OH is now in a nursing home and I was sole carer for four years until I broke. I feel like I am living the Dementia alongside him, too. That is such a profound insight. There is no other illness that consumes the mind of the carer like this. It just will not let us go. It is so good to read your posts, thank you. warmest, Kindred.

 

[AliceA]

Must be very difficult for your Aunt, too. Unfortunately my Mum is an only child and generally speaking we are a small family. I sometimes think it would be 'easier' to have a big family who can share the burden, but that's just fanciful thinking I guess. Good to know your Mum wasn't in distress today - it's so heart wrenching isn't it, and difficult to express exactly what it feels like. I'm going over to see my Dad tomorrow, and then onto my Mum. Hoping it won't be too overwhelming. x

Larger family, more differing opinions to cope with?

 

[mjw1304]

Mum has been in a home since last September and her deterioration is steady. However in the last month or so I have been able to stop grieving for who she was and become able to love her for who she is now. It's taken a long time and she spends every Saturday with us although by the time we take her back around 5pm she cannot remember what she's done, just that she's had a lovely time. This time is all about making precious memories although sadly just for us but to have pictures of mum so obviously happy is lovely. Give yourself time and you will adjust to your new normal. We all get there in the end. Hugs xx

 

[Blodski]

I went to see her today - she was in bed sleeping (4pm). Anyway, she was pleased to see my Dad and me. But soon became upset and asking when is she going home, when can she see the bungalow, the girls are terrible, the language is awful etc etc. So hard. When it comes to driving off and she is standing in the doorway, I feel so utterly cruel and heartless. I can't really describe what it feels like, but my heart shatters every time. x