Just need to VENT!!!

[Merrymaid]

Mum, bless her, is now spending all her days in bed, eating & drinking little & sleeping a lot. I call in daily at the CH to sit with her, massage her, chat etc. I have 2 invisible siblings, who visit every now and then, one visited her last weekend and one due to visit next weekend. We don't 'chat' but I keep them updated of significant changes in Mum, which is what prompted these latest visits. I then had a phone call from Invisible 1 telling me how upset they were that Mum couldn't recognise them and how shocked they were at her deterioration! Invisible 2 then rings to tell me again what the other had seen, how awful it is and how THEY think Mum is doing.

I had a late night call from CH last night and after attending I spent a restless night concerned Mum was having a worse night than me. I just rang them now (5am) and discovered she had thankfully enjoyed a restful night after a difficult day yesterday.

And so a new day dawns.....

 

[Babymare01]

Hello there. Whilst I have no words of wisdom I understand where you are coming from. I to have a silent sibling. Visited mum 2 weeks before Christmas and that will be it till next Christmas. He sent a card( a card! really ! ) to me for mums birthday in January and know he wont visit for mothers day. He live an hour away so not other side of country and a journey he wanted me to make 4 times a week when mum was at home lol. I just now accept this and just get on with loving my mum has I always have. I get angry at times but am slowly realising it is a waste of my energy better spent on my mum

So whilst know words of wisdom and I fully understand where you are coming from try and let it go woooooshhhhhh over you head - so easy to say so hard to do but the energy is better spent on you and you mum. Hugs xxx

 

[Merrymaid]

So whilst know words of wisdom and I fully understand where you are coming from try and let it go woooooshhhhhh over you head - so easy to say so hard to do but the energy is better spent on you and you mum. Hugs xxx

Thank you for your response. You are absolutely right my energies are needed elsewhere and to be honest most of the time I do let it woosh over my head, I think tiredness just helped a minor annoyance become more than it was worth.

This forum is great for venting though, as we all know the trials & tribulations associated with dealing with AD on a daily basis and how things can become challenging on occasion.

 

[AngeMorange]

I'm an only child but am getting some similar comments from extended family members who are shocked at how quickly mum has gone down. She had to move from residential to nursing care a couple of weeks ago and is now mainly in bed, not really eating or drinking either. She is having the odd 'up' period but is sleeping a lot.

Just focus on your mum and let the rest go over your head - you will be content that you did as much as you could for her which will help in the long run.

 

[Madge99]

I also have two invisible siblings. Neither of them have seen my Dad for two years (since my mum's funeral). He is very poorly now, on end of life care. I haven't even told them, and I'm sorely tempted not even to tell them when he goes or invite them to the funeral. (They will find out when they get a letter from the solicitor about his will - I think that's all they will be interested in anyway)

 

[Lorraine Spende]

Ranting and Heartbroken

My Dad is in a nursing home. He is 85 and has Parkinson's too. We are a very close family and Mum and I visit him together on a Monday and separately on a Wednesday and Friday. The rest of the family fill the other gaps so he's rarely without a visitor. He has lost so much weight and sometimes eats well and other times not so much. The last few visits we have had have been heartbreaking. He gets down on the floor and talks in a jumbled mess and sometimes recognises us, sometimes not. I feel as though my heart is being torn in two and I am trying to be a support for mum but this helplessness feeling is beyond overwhelming. I cry every day and I mean every day. We are watching him waste away both physically and mentally and it's so cruel. I've just become a nanny for the first time with my daughter having a little girl and she is the light at the end of this very dark tunnel. I feel like everything is spiralling out of control and I'm normally a quite laid back person but everything is getting on my nerves. My Dad has been wonderful to me, and a fabulous granddad and great granddad and all this is so vile. My poor Mum is taking every day as it comes and she also is struggling with the spiralling downwards. Crying whilst typing. I'm angry too. I believe he is entering end of life too and never thought I would say this but I want him to have peace and not suffer anymore. I want to scream. I wanted to empathise with you and feel for you so much. Big hugs XXX

 

[Merrymaid]

I'm an only child but am getting some similar comments from extended family members who are shocked at how quickly mum has gone down. She had to move from residential to nursing care a couple of weeks ago and is now mainly in bed, not really eating or drinking either. She is having the odd 'up' period but is sleeping a lot.

Just focus on your mum and let the rest go over your head - you will be content that you did as much as you could for her which will help in the long run.

Thank you AngeMorange, it's a hard road we walk and sounds like we are both at similar milestones, thank you for your support and best wishes for your journey with Mum.

 

[Merrymaid]

I also have two invisible siblings. Neither of them have seen my Dad for two years (since my mum's funeral). He is very poorly now, on end of life care. I haven't even told them, and I'm sorely tempted not even to tell them when he goes or invite them to the funeral. (They will find out when they get a letter from the solicitor about his will - I think that's all they will be interested in anyway)

Hi Madge99 so sad to think that the value of a parent can be measured by their will. Take care, I know how draining this time can be x

 

[Merrymaid]

My Dad is in a nursing home. He is 85 and has Parkinson's too. We are a very close family and Mum and I visit him together on a Monday and separately on a Wednesday and Friday. The rest of the family fill the other gaps so he's rarely without a visitor. He has lost so much weight and sometimes eats well and other times not so much. The last few visits we have had have been heartbreaking. He gets down on the floor and talks in a jumbled mess and sometimes recognises us, sometimes not. I feel as though my heart is being torn in two and I am trying to be a support for mum but this helplessness feeling is beyond overwhelming. I cry every day and I mean every day. We are watching him waste away both physically and mentally and it's so cruel. I've just become a nanny for the first time with my daughter having a little girl and she is the light at the end of this very dark tunnel. I feel like everything is spiralling out of control and I'm normally a quite laid back person but everything is getting on my nerves. My Dad has been wonderful to me, and a fabulous granddad and great granddad and all this is so vile. My poor Mum is taking every day as it comes and she also is struggling with the spiralling downwards. Crying whilst typing. I'm angry too. I believe he is entering end of life too and never thought I would say this but I want him to have peace and not suffer anymore. I want to scream. I wanted to empathise with you and feel for you so much. Big hugs XXX

Big Hugs right back to you. Thank you for empathising when you have so much to cope with yourself. xxx

 

[Raggedrobin]

I'm so sorry Lorraine, it can be so heartbreaking, can't it?

merrymaid, I'm with you all the way about the invisibles. My invisible sister actually sent me a note in her Christmas card telling me she had been in touch with the staff and Mum is happy and on suitable drugs. I live up here in order to be near Mum and know and have campaigned for various medicines for her. Sadly I would hardlh describe my Mum as happy, although she is more peaceful now. To have my sister tell me what is going on when she hasn't actually visited Mum for 3 years and I am up here with Mum is maddening. So I feel your pain.

It also feels so hurtful to the person with dementia, doesn't it? You just know how much a visit from a child with a familiar face/voice would mean to them. And how much it would be a relief to not always be the one trying to be a one-person entertainment system for them. Its all so very, very wearing.

The invisibles syndrome is something I had never heard of and never expected to encounter in my own family. Yet it surprises me also that amongst my friends, as they have ageing parents, there are a percentage of otherwise perfectly nice, kind people who for some reason refuse to engage at all in helping out. When I say 'well what about the sibling who does all the visiting/caring etc?' The response is often that they like doing it/have nothing important to do/live nearer etc etc. I have a couple of friends who simply don't get what a burden this puts onto one sibling. It's just weird. Oops, sorry, I have gone off on my own personal invisibles rant, now. It's your fault, Merrymaid, get me onto this subject and I can't stop...

 

[Spamar]

Good grief, raggedrobin, how did you keep your cool? I don't have siblings, but I would have shot back a really sarcastic email at the very least!
My congratulations!

 

[Merrymaid]

I'm so sorry Lorraine, it can be so heartbreaking, can't it?

merrymaid, I'm with you all the way about the invisibles. My invisible sister actually sent me a note in her Christmas card telling me she had been in touch with the staff and Mum is happy and on suitable drugs. I live up here in order to be near Mum and know and have campaigned for various medicines for her. Sadly I would hardlh describe my Mum as happy, although she is more peaceful now. To have my sister tell me what is going on when she hasn't actually visited Mum for 3 years and I am up here with Mum is maddening. So I feel your pain.

It also feels so hurtful to the person with dementia, doesn't it? You just know how much a visit from a child with a familiar face/voice would mean to them. And how much it would be a relief to not always be the one trying to be a one-person entertainment system for them. Its all so very, very wearing.

The invisibles syndrome is something I had never heard of and never expected to encounter in my own family. Yet it surprises me also that amongst my friends, as they have ageing parents, there are a percentage of otherwise perfectly nice, kind people who for some reason refuse to engage at all in helping out. When I say 'well what about the sibling who does all the visiting/caring etc?' The response is often that they like doing it/have nothing important to do/live nearer etc etc. I have a couple of friends who simply don't get what a burden this puts onto one sibling. It's just weird. Oops, sorry, I have gone off on my own personal invisibles rant, now. It's your fault, Merrymaid, get me onto this subject and I can't stop...

Thanks for your support & understanding Raggedrobin....sorry to get you going!