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Goodbye and Hello

Woo2

Registered User
Apr 30, 2019
2,621
South East
I am taking the plunge and starting my own thread , I want to be able to look back and see how things were and how we move forward . Thank you to a very kind and inspirational poster (you know who you are ) for giving me the encouragement to do it . It feels daunting and ever so slightly scary but hey I live with Dementia in my life 24 hrs a day so this can’t be that hard surely ?!

Pre April 2019

lots of time spent helping care for dad who was really quite poorly and mum who has Alzheimer’s , Taking them for hospital appointments and treatment etc . Having mum to my house for a day once a week to give him a break.

April 2019. After asking dad about a plan B should anything happen to him , I spend 3 days up there looking after a very ill dad and helping mum. I leave theirs for an hour to pop home, I ring mum to make sure all ok, she says she can’t find dad , ask her to look for him as he was in bed when I left him . You can guess the next part , my beloved dad had died 😥, I did no more but flew out the door with hubby in tow and we reached their house in under 2 minutes but must of felt hours to Mum .we waited for Paramedic , police and then finally Undertakers , then grabbed mum some basics and bought her back to ours as was always the plan . At that point I waved goodbye to my old life and said hello to a new one.

Here we are now , pretty much settled in to this new way of life , my own successful business was sacrificed , but I am happy with that as I have a poorly daughter that needs me at home too so I am not complaining , i will return to work . After reading a lot of threads I realised I needed help with mum and as I have an invisible it needed to be outside assistance , she now goes to a day centre twice a week and we have a private carer in for 2 hours one day a week, I do feel now that I have too much of a break considering a lot of people have it so much harder and don’t get that much time away. The carer is here because we have a wedding in the summer and I have no one to sit with mum so I wanted to allow plenty of time for them to build a relationship.

I have noticed only the smallest deterioration in Mum , considering she has left her home , lost her husband of 55 years, and is living with us she has been remarkable . She is calm and happy 99% of the time . I am very thankful for that .

Well here goes .................
 

charliejack

Registered User
Dec 13, 2019
26
Hi woohoo I'm quite new to this journey. Im sorry to hear about your dad, it sounds like you have been there for your mom and this shows in that she is quite calm a lot of time.
Think I should start my own thread as I keep chatting about myself on annielou's! X
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
Hi @charliejack , I was going to call it goodbye 47 hello 48 :D . You should , it’s taken me about 11 months so don’t follow my lead . I have rambled on annielou’s too . It helps if you have specific questions to have your own and also you can go back and see how things have changed (if you want to ) . Thank you but I cant take credit , Mum has always been that way , she did go through an aggressive phase with my dad but never with anyone else . She is quite content , that is a blessing . I see you have a struggle sometimes, it’s very hard . I hope you can get something sorted and the new medication helps .
 

Sarasa

Registered User
Apr 13, 2018
1,670
@Woohoo, glad you have started your own thread, and are finding strategies to navigate the mindfield that is dementia.
 

annielou

Registered User
Sep 27, 2019
1,622
Yorkshire
That must have been so hard dealing with your own grief over you dear dad, while helping your mum with her grief and adjusting to living somewhere else without her husband and main carer, looking after your daughter and rest of your family and adjusting to a different life, you are a superwoman x
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
I’m certainly not that @annielou , I don’t think I have grieved for dad yet , I didn’t feel able to , i think I will do that for both of them when mum goes . I was lucky to be very close to my dad , my mum no longer mentions him , I used to talk about him but I didn’t get any reaction at all so I stopped for fear of upsetting her.
 

annielou

Registered User
Sep 27, 2019
1,622
Yorkshire
Aww bless you that must be hard, I suppose you haven't had time to grieve for him yet with caring for mum. x I hope you can talk about him to rest of family at times mum is in her room if you want to x
My mum is the opposite, before she started with Alzheimers we didn't really talk much about dad, but lately she is forever talking about him and has confused when they split up and why and often asks how he died and sometimes asks if I'm sure he has died and when was it. I hate talking about it now as its upsetting for both of us if I have to remind her they weren't together for a very long time before he died and going over it again and again and seeing her mixed up about it is upsetting. Seems like Alzheimers has affected both our mums memorys about our dads but in different ways:(
You might not think you are a superwoman but I do 🦸‍♀️
 

Bikerbeth

Registered User
Feb 11, 2019
1,537
Bedford
Hi @Woohoo - nice to see you took the plunge and started your own thread. I too started mine for very similar reasons.
what a hard finish to your old life for both your Mum and for you.
You mention with your Mum at day care 2 x a week and a carer coming in for 2 hours and that you have too much of a break compared to others. as they say 2 wrongs don’t make a right. Every carer deserves time off. Nobody knows how long their particular journey will be with their PWD but you need that time for you and you mention you have a poorly daughter too that needs you at home. On the course I went to today it was reiterated several times - never feel guilty about time for yourself
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
That’s really hard , that’s got to be incredibly difficult , how do you not get upset ? My invisible sister is furious with mum for not crying about him on his birthday and she thinks mum has stopped caring , had to tell her it’s the horrid disease .
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
Thanks @Bikerbeth , I felt really nervous about it . Hmm maybe , when I rang the carers agency I hadn’t left mum for more than 20 minutes in 9 months and I was getting to the stage where I was irritated , the day centre has been a godsend . She hasn’t been this week as had a slight cough and I thought I would be grumpy for not having any time away but it’s been fine and I have actually enjoyed it . She is back mon though 🤞. The carer i am only having as mums best friend is away on holiday at time of wedding or she would of had mum , plus I think it’s easier to introduce her now while mum is calm and happy rather than wait until I desperately need someone . I may even drop a day centre day , will see . When mum saw psychiatrist in December he said “she is healthy apart from dementia and at 71 she could live another 10 years, who knows what the future holds , we just live for today and try and enjoy it . Daughter is in and out of hospital every month -6 weeks so been over there today while hubby mum sat , she looked a bit grumpy as I was getting ready to leave so I told him there was a stash of ice cream in the freezer , bingo happy Mum again🙂. How’s your mum ?
 

Bikerbeth

Registered User
Feb 11, 2019
1,537
Bedford
I am afraid to say I did 4 months full time with Mum when she had cataract operations done just after diagnosis and I got irritated - well to be honest we both got irritated with each other. I also sneaked out each day for an hour either to walk or go to the shops.
I must also admit I got ‘housekeepers’ in early as I knew Mum would need Carers at some point down the line. I was lucky that she mentioned she was struggling with making the bed so I just seized the opportunity and used that as the reason I also think by that time she could not use the vacuum and just managed with a very old fashioned carpet sweeper. So fortunately when I needed them to support her with taking her tablets she did not seem to mind.
Your poor daughter having to go to the hospital each month - that must be hard.
a mere mention of ice cream and my Mum would have been round to your house in a flash, mind you my OH would be close on her heels so I know what you mean by a happy Mum.
A few tears, a small strop, confused but I did get a few smiles When I put Crufts on her tv. That was my Mum today, thank you for asking
 

Lynmax

Registered User
Nov 1, 2016
542
We too recently started using carers three times a week for mum ( 87 yrs old, has Alzheimer's for 5 years, lives along with support, also has breast cancer) as although my sister now works as her Carer three or four days a week with me and my brother covering the other days, I was worried about when one of us was on holiday. So the care agency started three weeks ago, going round for two hours between 11 and 1 to cook lunch and chat. So far it is going very well, we have one last for the weekends and a different one on a Monday and the plan is they will cover each other and also add extra days if we increase the visits. Mum thinks they are family friends popping in for lunch!

We haven't looked at day care yet as someone would need to be there to get mum ready as she, like me, tends to float around in her pyjamas until late morning! Our aim is to help her remain at her house until it becomes unsafe when a care home becomes inevitable. I'm afraid I am not a good enough person to have mum live with me, too impatient and stressed! My sister has young children and a part time job and my brothers partner is blind so needs his help.
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
4 months is a long time ! I am no saint , please don’t feel that way , it’s incredibly bloody hard , hubby accept mum is here and agreed to it but it’s not the life he wanted , he would not have his mum or dad live with us (they live in granny annexe anyway) and he wouldn’t expect or want our daughters to care for us if we got like that , so it’s a struggle to keep everyone happy , one daughter is cool with Nan here , the other isn’t comfortable but understands . If dad had died when mum wasn’t so far along the dementia path then maybe she would have stayed at home with my and carer support but I knew she couldn’t be left alone and was vulnerable and I promised my dad I would take care of her . I could not have left her that night alone, I stayed there lots when dad was in hospital but I couldn’t do that long term with two young ish daughters still needing me around . I don’t blame anyone for not having there PWD live them, I admire them .
isn’t it amazing , ice cream is the absolute fave but cake or chocolate work well too when the frowning / stroppy face appears . Good to hear mum was a little better today . 🙂
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
We too recently started using carers three times a week for mum ( 87 yrs old, has Alzheimer's for 5 years, lives along with support, also has breast cancer) as although my sister now works as her Carer three or four days a week with me and my brother covering the other days, I was worried about when one of us was on holiday. So the care agency started three weeks ago, going round for two hours between 11 and 1 to cook lunch and chat. So far it is going very well, we have one last for the weekends and a different one on a Monday and the plan is they will cover each other and also add extra days if we increase the visits. Mum thinks they are family friends popping in for lunch!

We haven't looked at day care yet as someone would need to be there to get mum ready as she, like me, tends to float around in her pyjamas until late morning! Our aim is to help her remain at her house until it becomes unsafe when a care home becomes inevitable. I'm afraid I am not a good enough person to have mum live with me, too impatient and stressed! My sister has young children and a part time job and my brothers partner is blind so needs his help.
You are a good person ! You support and care for your mum, just not in your home , that is perfectly understandable and reasonable . ☺
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
Well a huge plus this morning, managed to get mum in the shower , sounds silly but it’s almost a battle to get her in there more than once a month. She used to have a strip wash every day but flannels have been dry for about 2 weeks, teeth brushing is very sporadic too , maybe I should be trying harder but I try to pick my battles , how does anyone start to step in to help their PWD wash ? I am finding very hard to cross that line from daughter to carer .

Like many others mum was always very smartly dressed , nails always painted . If I paint them now she sits there and picks it all off within an hour or so .
Why do I question every single thing I do ?! Have I taken her to gp often enough , should I take her to the dentist more frequently , should I be doing this that or the next thing , I worry about her wellbeing more than if she was my child . Oh well onwards and upwards . Feel better just writing this down . I’m sure in the future I will read this back and wonder why I worried so much about her not getting dressed some days .
 

MaNaAk

Registered User
Jun 19, 2016
2,497
Essex
I’m certainly not that @annielou , I don’t think I have grieved for dad yet , I didn’t feel able to , i think I will do that for both of them when mum goes . I was lucky to be very close to my dad , my mum no longer mentions him , I used to talk about him but I didn’t get any reaction at all so I stopped for fear of upsetting her.
Dear Woohoo,

I'm sorry to hear about your dad. I lost my dad last year and when he passed I realised that I was grieving for mum as well. You are doing a wonderful job and it sounds like your mum is settled because she has plenty to occupy her mind. Don't forget to ask for more help when the time comes.

MaNaAk
 

Bikerbeth

Registered User
Feb 11, 2019
1,537
Bedford
My Mum sounds like your Mum. When she was at her bungalow she would have a shower when I stayed over (as she was frightened of falling and being trapped in the shower) and would have a strip wash in between.
Both the carers and I have noticed since she has been in the CH she is not showering or washing much. The Carers do try and prompt but only the senior carer seems to have some success. I occasionally can also get her to have a shower - the first time I made a joke that her feet were really stinky and that she must had been jogging round the CH first thing. With grumbling it did work but I know what you mean about the change from being a daughter to a carer. Although Mum has lost her inhibitions I must admit I still feel quite embarrassed when she just strips off in front of me.
So no it is not silly and a big pat on the back to you.
Anyone who cares will ask themselves those questions. You are being a good carer
Ps thank you for reminding me I need to book Mum in for a check up at the Dentists 🙃
 

Woo2

Registered User
Apr 30, 2019
2,621
South East
What do you do about dentist @Bikerbeth ? Do I tell them on phone about her Dementia so they don’t tell her off for not cleaning her teeth properly ? I’m sorry to say I have not taken her yet ,she was there for a check up literally the week before dad died so it was nearly 10 months ago. I keep going to book it then chicken out. Thank you for your kind words ☺ .X