All new to this!

[JB]

Hello everyone,

My first time posting here, so sorry for my waffling. My mum died about 2 months ago of cancer completely out of the blue. She was diagnosed with an aggressive form of it and then died 2 weeks later, so none of us were ready for it. Since then my Dad (completely understandably) has gone down hill. He 100% has Dementia but doesn’t have a diagnosis yet. Due to him refusing to engage with anyone that has tried to test him. He has expressed that he wants to live with me and not on his own now that mums gone. Which means I’m going to have to give up my job, which is fine as family are #1. He hasn’t had a bath/shower for almost 2 months and I feel I have tried everything to get him to have one. Any tips? He knows he’s got an ‘issue with memory’ but he won’t acknowledge it. I guess he’s scared?! We have discovered that Mum had been hiding a lot from us regarding Dad and how bad he has got?! So it’s a step learning curve. Sorry for long chat. Just a bit lost with it all

 

[AliceA]

A diagnosis is useful as it could ensure Attendance Allowance. The type of dementia indicates whether there is medication that will help or not.
Perhaps you could write to his GP with your concerns, you all must be grieving as well, so be careful with decisions made too soon if you can or if it is possible. Keep in touch on this, it is very supportive.

 

[KathrynAnne]

Try not to get overwhelmed by everything and take as much help as you can get.
I’ve found that telling my Mum we are doing something is a much better approach than asking if she wants to do it. For example when I think she should have a shower I always say ‘You are having a shower today’ and just get on with getting her ready for it. If I ask her if she wants a shower she will invariably say no. I use the same approach when giving tablets. Rather than saying ‘Are you going to take your tablets?’, I’ll say ‘It’s time to take your tablets. Put it in your mouth.’ It doesn’t always work but I have much more success with doing it that way.

 

[nae sporran]

Welcome to TP, and condolences n the loss of your mum, Jody. I'm sorry I can't offer much on how to get your dad to get a diagnosis, but you may want to get Social Services involved to try to get him some help with personal care. I don't know, in his state of dementia mixed with grief, if he will accept help. It's just an idea which may get you In touch with someone who can help if you explain the situation.

 

[JB]

Thank you all very much, you have been so helpful already ☺️

 

[Gingercatlady]

What a hard time you are having, I agree with the post about telling your father what's happening such as having a bath. It's what we have to do with my mum. It's best done in the moment and getting the job done there and then. My mum was also very attached to wearing the same fleece jacket despite having others and I simply said 'wear this one today' and changed the fleece. Mum did it, I think she finds it hard to make any choices and just goes for what's familiar and there at the time.

Good luck with everything, and condolences on the loss of your mum.

 

[Shedrech]

hello @JodyBowry
a warm welcome from me too and my condolences on losing your mum
I really do recommend that you contact your dad's Local Authority Adult Services and explain the situation especially how much you now realise your mum did for your dad who is no longer able to look after himself so is now a 'vulnerable adult ' who is 'at risk' due to self neglect and as the LA has the 'duty of care' he needs an urgent assessment of his care needs ( the words in '' are key phrases that the LA should react to ) - do not disclose anything of his finances (say you have no idea as he keeps things to himself), a financial assessment ought to follow that for his care needs
hopefully a care package will be put in place to enable him to cope at home
this can be done without a dementia diagnosis
I do agree that contacting your dad's GP is a good idea - set out bullet points of what he is no longer able to do for himself and also differences in his behaviour and abilities comparing them to 1,2,3 years ago, and be utterly blunt, don't hold back - ask if the GP could make a home visit or call him in eg to review medication, for the flu jab - it is tricky if your dad is reluctant to engage, so you may need to be a bit underhand - would your dad bite if you said eg there's money from the government for people who agree to join in this research (which isn't a complete lie as you can apply for Attendance Allowance and when that is granted, with a diagnosis, Council Tax is disregarded too )

please also think very carefully about giving up work - family is important but so is your future - if you give up work Carer's Allowance is only about £65 a week, you will lose out on any company pension and savings disappear pretty quickly (I know, I stopped working but had no mortgage and was within a few years of a pension kicking in - it has affected my income drastically) - there are other ways to support your dad and make sure he gets the care he needs
my dad too wanted me to move in with him, but I knew I needed some independence and that I wasn't willing to devote myself 24 hours a day to his needs ( there were other issues too) - maybe read around TPand find the threads of those who live with the person they care for to get a real idea of what this entails

 

[Duggies-girl]

I echo what @Shedrech says about giving up your job. I gave up work in February to look after dad as it had all become impossible. My boss said she would have me back at any time and she would have but she has now gone to another job so that option has gone although I could probably get my previous job back if I wanted (I don''t)

If your dad is not already getting attendance allowance/DLA at high or middle rate you could find yourself having a real struggle getting him on it. I had a hell of a fight getting dad put up to the middle or higher rate and we were turned down twice. Dad's dementia is quite advanced and he could not manage on his own for even a day. The only reason he finally got it was because he was diagnosed with terminal cancer and his consultant sent in a special form that automatically gets him the higher rate and entitles me to claim carers allowance.

I am also sorry for your situation as it is similar to mine seven years ago. Mum died suddenly and dad's dementia soon became apparent. I think mum had covered for him although she had told me on a number of occasions that his memory was bad. It has been a long journey for us both.

 

[JennyC_123]

I agree the others -- try not to give up your job. The job helps with financial stability and gives you respite. When you're caregiving it's easy to lose yourself in the other person. With a job, you will have something else on your mind. Office politics and deadlines become good distractions. Is it possible for your dad to stay with you, but you get caregivers to come in during the day? That way you can still help him during the night and show you care.

In my family, we also believe "family comes first". At the same time, my mom and dad would want me to make the long-term decision that makes sense. It is because my parents love me that they would want me to continue to work, so that after they're gone, I can still take care of myself.

 

[Baz22]

Hello everyone,

My first time posting here, so sorry for my waffling. My mum died about 2 months ago of cancer completely out of the blue. She was diagnosed with an aggressive form of it and then died 2 weeks later, so none of us were ready for it. Since then my Dad (completely understandably) has gone down hill. He 100% has Dementia but doesn’t have a diagnosis yet. Due to him refusing to engage with anyone that has tried to test him. He has expressed that he wants to live with me and not on his own now that mums gone. Which means I’m going to have to give up my job, which is fine as family are #1. He hasn’t had a bath/shower for almost 2 months and I feel I have tried everything to get him to have one. Any tips? He knows he’s got an ‘issue with memory’ but he won’t acknowledge it. I guess he’s scared?! We have discovered that Mum had been hiding a lot from us regarding Dad and how bad he has got?! So it’s a step learning curve. Sorry for long chat. Just a bit lost with it all

Hi Jody
Just seen your posts and read the thread. Echo all the really good advice given to you particularly the people asking you to think long and hard before giving up your job. There is no easy route forward and if it is unfamiliar territory get the Alzheimer Society's booklets to help you understand what is going on. I always smile when I read of other member's distraction techniques as I had always been really honest with my mother until she progressed to advanced dementia and now I "shade the truth" all the time and deploy distraction methods.
Make sure you create some "me time" it is essential to stay sane and in control as others around you may falter. You will have hard decisions to make but I have found this Forum very helpful. My Mother will do something and when asked about it will immediately say "No I haven't" even though it was seconds before. It is not personal, it is just the brain not functioning quite the way we expect.
Good luck as you progress forward and do not be reticent in asking people for help. NHS and LA help can be patchy depending on where you live but just plug away. All the best.

 

[Slugsta]

Hi and welcome to TP. I am sorry for your loss, it must be particularly hard to deal with your mother's sudden death and your father's downturn in abilities. It is likely that your mum was 'covering' for him and taking on a lot of the things he used to do.

Please think long and hard about a) having your dad to live with you and b) giving up your job. These are both things that are difficult to undo once they have happened.

I suggest you read some of the threads on this site that deal with people caring for PWD (Persons With Dementia) in their own home, and those that talk about 'carers' breakdown' - I don't want to frighten you, but I do want you to understand the potential difficulties before you take such a big step. The long-running thread 'Can I, should I?' would be a good place to start (although I should warn you that the author, Sam, lost her PWD recently).

Whatever you decide, you will find information, advice, support, and some laughs here on TP

 

[Gingercatlady]

Hi,
I've just had a very unsettled period with my PWD as main carer went into hospital and social services plan fell through dramatically, I thought about giving up my job and taking it on as main carer has cancer. I spoke to my doctor who was very caring and suggested that I take some sick time and wrote me a ticket. This has given me time to allow things to settle and organise things, while protecting my job, maybe it's something you could do. The reason I'm off is stress, and let's face it, it is very stressful caring for PWD.

Wishing you all the best don't make spur of the moment decision, think first, sleep on it.

 

[TeletubbyPo]

Hello everyone,

My first time posting here, so sorry for my waffling. My mum died about 2 months ago of cancer completely out of the blue. She was diagnosed with an aggressive form of it and then died 2 weeks later, so none of us were ready for it. Since then my Dad (completely understandably) has gone down hill. He 100% has Dementia but doesn’t have a diagnosis yet. Due to him refusing to engage with anyone that has tried to test him. He has expressed that he wants to live with me and not on his own now that mums gone. Which means I’m going to have to give up my job, which is fine as family are #1. He hasn’t had a bath/shower for almost 2 months and I feel I have tried everything to get him to have one. Any tips? He knows he’s got an ‘issue with memory’ but he won’t acknowledge it. I guess he’s scared?! We have discovered that Mum had been hiding a lot from us regarding Dad and how bad he has got?! So it’s a step learning curve. Sorry for long chat. Just a bit lost with it all

Hi Jody
This tip comes from a nurse who was helping with my paternal Grandmother who had Alzheimers in the 1950's My Mum told me about it: ...The nurse asked if she could just wipe her face with a flannel,my Grandmother agreed and the nurse ensured it was very wet, in wiping her face the water dripped all over my Grandmother,effectively getting her quite wet,so she then said " Oh dear, you're all wet,we'll have to change you now" and that enabled the nurse to get her completely washed....worth a try? May not work...but with this illness you have to "box clever"

 

[Baz22]

Hi Jody
This tip comes from a nurse who was helping with my paternal Grandmother who had Alzheimers in the 1950's My Mum told me about it: ...The nurse asked if she could just wipe her face with a flannel,my Grandmother agreed and the nurse ensured it was very wet, in wiping her face the water dripped all over my Grandmother,effectively getting her quite wet,so she then said " Oh dear, you're all wet,we'll have to change you now" and that enabled the nurse to get her completely washed....worth a try? May not work...but with this illness you have to "box clever"

I love this post, very resourceful and thanks for sharing it.