Can I ... Should I?

[Lavender45]

It's your fault because she knows something is wrong, but she doesn't have a way to fix it. It's your fault because you are her fantastic, brilliant, strong and clever daughter who sorts things out. You are the daughter who shops and cooks and cleans and keeps her safe and organises everything. You are so great, yet this thing is still wrong and you haven't fixed it. You sort everything, but not this, why not, you do everything?

We all know the reality is that this is beyond anything any of us can fix, one day it will happen a cure will be found please God, but not today. It's not your fault, none of this, but she loves you and you are so close to her and you get it in the neck every time, you are fair game in faulty dementia logic.

I know these things because I have been there before you. My mum has alzheimer's (and possibly vascular dementia) because I worked full time and left her alone in the house whilst I worked it was my fault she got ill. I was selfish and mum paid the price for my selfishness by getting ill. That was my mum's accusation to me and it hurt like the very devil, to a degree it still does. It was so unreasonable, but she couldn't see it. Dementia played with her logic and reasoning and took the break off of her mouth so that whatever was in her head was vocalised. Come to that she also told me she never wanted me as a child and didn't want me now. That one still wounds.

We both know we should ignore the bad bits, the wanton damage of the roses, the hurtful words, the temper tantrums (my mum) and everything else, but we are human, words and actions hurt and logic isn't always able to put salve on it.

I remember waking our dog one night and thinking about not going home. I very seriously considered walking away. I didn't, but I did sit in a bus stop and cry. I sat in the park and cried. I sat up late and cried and drank wine which didn't make it feel better, but I tried, I even sobbed down the phone to the Samaritans around 1am one morning. I doubt I made any sense, but I did it.

I'm saying these things because I want you to see that it's not just you. In a bizarre way how you feel is normal, if anything is normal in the world of dementia. I want you to see that you are a very good daughter and your mum is blessed to have you.

Today has been a bad day. Tomorrow may be better. I hope it is. You did mention care homes. I'm not saying do it, but I'm not saying don't. Caring for dementia comes in a million guises, hand on or ensuring that the hands on stuff is done by professionals. We all do as much as we can and then some, there's not a right or a wrong, there is just what is needed. X

 

[LadyA]

Very well said, Lavender. Very well said. xx

 

[Sam Luvit]

It's your fault because she knows something is wrong, but she doesn't have a way to fix it. It's your fault because you are her fantastic, brilliant, strong and clever daughter who sorts things out. You are the daughter who shops and cooks and cleans and keeps her safe and organises everything. You are so great, yet this thing is still wrong and you haven't fixed it. You sort everything, but not this, why not, you do everything?
X

Lavender

You made me cry ... again . I'm going to look like s**t when I finally get back to work tomorrow

I'm not so sure about being great, but the "break off her mouth", think that's pretty spot on.

I know they are just flowers, I know they will grow back, I even know they will be stronger next year, but ... but, she did it to other flowers last year & I'm still waiting for their recovery & I don't know if she will see them "next year". I want to see it now, not waste a whole blooming 12 months waiting to maybe get her to see them.

I don't like my new normal . Don't think the dog's too keen today either

I was about 12 or 13 when my mum told me, she only had me as she was married and that was what you did, you got on with it, being married meant you had to have an heir & a spare!! She wasn't exactly maternal . We built an adult relationship in my 40's, now it's stretched to breaking. I don't have a lifetime of memories to hold it together.

I guess it's been "one of those days", I've had PPI claims, Funeral Plan etc calls, mum bring "not mum" & I'm tired.

Thank you for giving me a talking to, I needed that

 

[rosy18]

Aw Sam I'm so sorry that you have had a bad day. It's just all so relentless.
Crying is good Sam sometimes we just need that release I can definitely vouch for that I don't think I've ever cried as much as I have these last few years.When Mum was first diagnosed and they told me it was late stages which is what I thought I couldn't stop crying partly for my Mum and selfishly also for me as I knew then that for the next however many years I would be spending it taking care of Mum.
Then Mum had an angry period being aggressive towards me and the hurtful things she used to say used to knock me for six, I guess what I'm trying to say Sam is that it is this awful disease not our Mums saying these hurtful things. Your not alone we are here for you every step of the way but please know that we have all wanted to run away at some stage and sometimes a CH is to be considered if it all gets too much but you are doing a fantastic job and your Mum is so lucky and blessed to have you.
Some days we really do just feel like enough is enough but then tomorrow is another day and we hope and pray that it will be a little easier.
Today I got Mum to singing although she wouldn't have any breakfast, the woman from the alzheimers society who runs it is great. She came out when we arrived to help me with Mum as she's so unsteady now and the same when leaving when she said to me "what support had I got in place"I told her about the care I now have coming in to help with Mum but then she said "what about support for you" My TP family I said without them I dread to think...but I nearly burst into tears,it's always the same when someone says to me "how are you"
For the first time Mum seemed to weak and disinterested in the singing and became a little anxious,we'll just see how it goes.
Sending loads of (hugs) xxxx

 

[Margi29]

I've blubbered down the phone to Margi (sorry), I've drunk a whole bottle of wine & when I went to tell mum I was taking the dog out, she kept her eyes closed and said "ok"

Mum is in the shower, so she was not asleep

Feeling so low, I was crying walking the dog, while baitching at dad for leaving me with this

Yeah, I know, it the bloomin *ing disease. But that doesn't help me right now.

It's so unfair. I really do try to do things for her, every meal, every outing, every day, she is the first consideration.

Why does she keep telling me it's my fault??

I'm tired. I'm in pain. I am not sure how to keep at this

Maybe I should give up & move out. She'll go into a CH &. I'll maybe visit now & then

Anytime, I'm always around , though sometimes in bed due to nights

In my spare room, dad is sat waiting on top of the wardrobe ( in the urn in a bag)
One day they will both be mixed together and sprinkled where dad proposed to mum.

I have often give my dad a few choice words about mum on bad days
I just really wish he was here, I miss him dreadfully
I'm sure dad in his normal personality before dementia took him, will either be laughing till his ribs ache or thinking, that goodness that's not me looking after PWD, where ever he is

I'm only a phone call away x

Ps again I hate dementia, it's *rap !!!

 

[rosy18]

Just made me smile as I pictured us all tapping away together at the same time doing the post

 

[Margi29]

Just made me smile as I pictured us all tapping away together at the same time doing the post

Me too Rosy it's good we can all chat on here x

I sometimes wonder where's my mum ?? Who's the imposter whose a gremlin, looks like mum and sounds like her but....

I too understand the tears after finding out diagnosis, it's so hard after to realise life will never be same again, we just have to cherish the memories of past wonderful holidays we have had with our mums and the good moments that were shared.

Yesterday was eye test for me, so took mum. Another wow day !!
It's so hard because mum is no longer sure what letters are infront of her, so it's made doubly hard for her test !! i.e. Can she see them ?? Does she know them ??
Three hour in there !! Must be a world record for an eye test

Today I'm on a training course, they bore me ridged !! I spend the entire time thinking of the things I should or could be doing

Best wishes to you and your mum x

 

[Margi29]

Hi all

Thought you may appreciate a smile today.

Mums new glasses she chose £25

Mine £125

Mum : " mine are expensive !!! They used to be much cheaper "

I've no idea where she used to go !!

 

[LadyA]

Hi all

Thought you may appreciate a smile today.

Mums new glasses she chose £25

Mine £125

Mum : " mine are expensive !!! They used to be much cheaper "

I've no idea where she used to go !!

Depends how long she's been wearing glasses? I suppose if, like my mum, she's been wearing them since her 20s, then they would have been "cheaper" in ££ back 50 or 60 years ago, but not relative to her income at the time!

My mum, just this Summer, had both her front door and her garage doors replaced. Her front door was a fairly flimsy timber and large (single glazed) glass panel affair, which we've been on at her to have replaced with something more secure for ages. The garage door was an ancient "up & over" door, which had been damaged by the wind in a storm. Now, she has a very solid, thick "composite" door, very secure (although she's finding it very difficult to learn how the lock works!) and two big secure teak garage doors, which open & close easily, and she can just unlock one to put the bins out! She's thrilled with herself, but she did laugh when she realised that the cost of both was more than she and dad had paid for the whole house when they bought it in the late 1960s!! The house had cost somewhere in the region of £2,900 at the time, and they were hard pushed to find the mortgage payment each month. It was £25.

 

[Sam Luvit]

Aw Sam I'm so sorry that you have had a bad day. It's just all so relentless..
.
...but I nearly burst into tears,it's always the same when someone says to me "how are you"

Morning Rosy

I don't think I cried at diagnosis, but I did shed a few selfish tears driving away from my home the last time. I was full of optimism & determined to support mum. I didn't have a blooming clue

It's the dripping tap of boredom & snipping. No matter what I do, she finds something I've not done. I can't get it right. I emptied the garage, junked loads of rusted tools, old nails & heaven knows what else in there, resorted & its 3/4 done. I'm now slowly sorting the rest on to shelves (rebuilt) & clearing it away. Not quick enough for mum. She wants to get in there & sell off things, but I want to finish sorting & then start donating, selling or dumping.

I think what I find hardest is having a few good or just goodish days & then walking into either aggression or destruction it's not that I just took over the garden & did what I wanted, I discussed every single flower, bush & tree. She's watched me trailing bushes, supporting climbers & shaping bushes, says how nice it all looks, then when she knows I can't see, coz I've gone shopping or I'm out of sight, she cuts it all down it really is like a bad tempered toddler doing the "I can"

I don't think anyone has asked me how I'm doing in real life . They ask mum if I'm working & when I'm going to get a job!! She usually tells them I'm helping her, but sometimes she gets cross about it & starts telling me I need to sort my life out

Hope your mum regains her passion for singing, she's slways loved it. Do you think she might accept the wheelchair if she's more unsteady? If she would, it might take away some of the anxiety over falling.

Thanks Rosy, don't know where any of us would be without TP, although the bottom of a bottle would be high on the list

I've been sent to Coventry this morning, but I've not the energy to do anything about that

 

[Sam Luvit]

Ps again I hate dementia, it's *rap !!!

Morning Margi

Blooming icons won't work this morning

Dad sat in the office for quiet some time while paperwork was sorted, often suggested to mum I'd pop up with a vodka n tonic for him

I expect dad is shaking his head at me, he often said "your mum can be difficult to live with, but I couldn't live without her". I'd agree with the former .... I'll think on the latter later

Yes, dementia is that, although I first read it as "I hate dementia, it's a rap" !!!!!

 

[Sam Luvit]

Hi LadyA

Yes, it's all relative, but the "good ol days" don't mention that bit. My parents borrowed £800 for dad parents, to buy their cottage. When they'd finished paying it back, dad just left the standing order in place, saying his mum was used to the income & he didn't miss the tiny amount. It had been a struggle in the 60's, but was nothing 10 years later

 

[Sam Luvit]

I'm definitely still in the dog house

Mum was hanging out the lounge window so I couldn't hear her on the phone, arranging to go visit her friend

When we "met" in the kitchen, she glared at me & I said "I haven't the energy to argue"

Quick as a flash, with a stunning lemon face, she says "I've had enough arguing to last a life time"

Thankful I have the car back, I'm going to work for some peace

 

[Sam Luvit]

Well, did 3 hours at work, arrived home as mum was walking down the road, neighbour shouted out at me to "not run over the little old lady"

She walked off to the house without acknowledging me, so o called after her, asking if she could not manage "hello"

She'd disappeared upstairs by the time I got in, so dumped my bags made a coffee, gritted my teeth, put a smile on & called up asking if she'd like a coffee. "Ooh, yes please"

So I've made her a coffee & left her to calm down.

Heavens are just opening, so maybe I'll suggest raking the dog out to save her getting drenched

 

[Margi29]

Morning Margi

Blooming icons won't work this morning

Dad sat in the office for quiet some time while paperwork was sorted, often suggested to mum I'd pop up with a vodka n tonic for him

I expect dad is shaking his head at me, he often said "your mum can be difficult to live with, but I couldn't live without her". I'd agree with the former .... I'll think on the latter later

Yes, dementia is that, although I first read it as "I hate dementia, it's a rap" !!!!!

' it's a rap '

 

[Margi29]

Depends how long she's been wearing glasses? I suppose if, like my mum, she's been wearing them since her 20s, then they would have been "cheaper" in ££ back 50 or 60 years ago, but not relative to her income at the time!

My mum, just this Summer, had both her front door and her garage doors replaced. Her front door was a fairly flimsy timber and large (single glazed) glass panel affair, which we've been on at her to have replaced with something more secure for ages. The garage door was an ancient "up & over" door, which had been damaged by the wind in a storm. Now, she has a very solid, thick "composite" door, very secure (although she's finding it very difficult to learn how the lock works!) and two big secure teak garage doors, which open & close easily, and she can just unlock one to put the bins out! She's thrilled with herself, but she did laugh when she realised that the cost of both was more than she and dad had paid for the whole house when they bought it in the late 1960s!! The house had cost somewhere in the region of £2,900 at the time, and they were hard pushed to find the mortgage payment each month. It was £25.

My parents house in 1968, bought for £3,000

It must have been average price of houses in those days

 

[Margi29]

I'm definitely still in the dog house

Mum was hanging out the lounge window so I couldn't hear her on the phone, arranging to go visit her friend

When we "met" in the kitchen, she glared at me & I said "I haven't the energy to argue"

Quick as a flash, with a stunning lemon face, she says "I've had enough arguing to last a life time"

Thankful I have the car back, I'm going to work for some peace

Cream cake again ???

 

[Margi29]

Mum : Elsie's died
Me: when??
Mum : I don't know, some other lady told me.

I've seen Elsie and she looks remarkably well today

 

[Sam Luvit]

No doubt in my mind now, mum has definitely taken a downturn

I'm cooking dinner, she's ignoring me, but no lemon face, more hesitant & unsure

Anyway, I was walking past her, took a chance & sidestepped in front of her & grabbed her hands, pulled her arms around me & gave her a hug. Yay, she hugged me back

She then say ... "I'm sorry I've been such a cow to you today. I've had a wake up call"

L O N G story short, she went out with her friend D, who was awful, very embarrassing to be with & mum is worried she has dementia

Mum does not remember Dr F telling her she has Akz, doesn't remember telling me, didn't know that's why I moved down to be with her

So, she's forgotten what Alz is, so not stressing over that, which is good, told me the house is mine & next time she tells me to get out, I'm to tell her it's my F'ing house

She's a bit subdued, but holding my hand & saying she loves me. I've told her, she had 3 choices, I left her to it & waited for a crisis, I put her in a home or I moved. I won't promise she won't go in a home, but I'll do this as long as I can or until she gets violent

So we move along to the next stage by the look of it

 

[Sam Luvit]

Mum : Elsie's died
Me: when??
Mum : I don't know, some other lady told me.

I've seen Elsie and she looks remarkably well today

It's not Easter is it???

(No disrespect intended)