My dad has dementia and my mother has cancer

[lacey1960]

My mother has just been diagnosed with colon cancer and possible secondary liver cancer. My father has already been diagnosed with dementia and this seems much worse when he's worried or stressed! Therefore at times they're both really suffering from confusion and worrying about each other.

I'm an only child and single and have to work full time, unfortunately my job is shift work and I can't leave the plant once I'm on site. My mother has begged me not to put them into a home and desparately want to respect their wishes but worry as my father and possibly my mother get worse how I'm going to cope with it all?

Any advice and help would be greatly appreciated.

Karen

 

[Jo1958]

Karen, hello
Welcome to TP although I am so very sorry that you have had to look for us here.
I am so sorry to hear of the situation that your family finds itself in at the moment, it must be so lonely for you with both your parents having health problems and such frightening ones.
Your parents will be worried about you too and trying to communicate such fears if very difficult.
Please keep posting and let us know things go for you all. Take care of yourself, best wishes, Jo

 

[Soobee]

Hello Karen,

I was in a similar situation last year, my dad had cancer and as a result of this, he couldn't carry on looking after mum as he had been; she was diagnosed with vascular dementia last September. Dad underwent chemotherapy and was very ill after Christmas, but slowly recovered over the last few months.

Between myself and my brother, we ended up doing what HAD to be done, e.g. shopping, emptying the bins, cleaning the floors, making sure they were eating *something* and I contacted social services. They were actually really helpful and put a package of care in place, but my parents refused it and turned the carers away!

Get help from whatever source you can - and let everybody know the situation as it is vital that they take your dad's dementia into account when providing help to your mum. It may feel overwhelming at the moment but you will get support. xx

 

[Bronwen]

Hello Karen.what a sad and upsetting time for you. I know it is hard for you to think of a care home for your parents and only time will tell you when that time has come.

I know how you are feeling exactly, my husband and I always promised each other we wouldn't put one another into a home, but sadly his dementia is so bad now that this week i have had to take that dreaded step. Part of me is relieved he will have so many people watching out for him, but when I say goodbye to him, my heart breaks and I wish I could bring him home.

It isn't going to be easy for you Karen..please look after yurself as well.

love
Bronwen x

 

[Helen33]

Dear Karen,

I am so sorry that you are having to deal with such stressful and emotional situations with both your parents.

I would suggest that you contact the Hospice as soon as you can because they have wonderful provision available for people with cancer (and all the family members). There is a Hospice at Home service and I think the sooner you get the ball rolling the better. As they have provision for family members, you may find that they can offer assistance for your father as well. I am not sure about this but feel it is well worth asking. You may need to go through the GP but I would suggest you ring the Hospice and they will tell you the procedure.

Love and best wishes

 

[noelphobic]

.
I'm an only child and single and have to work full time, unfortunately my job is shift work and I can't leave the plant once I'm on site. My mother has begged me not to put them into a home and desparately want to respect their wishes but worry as my father and possibly my mother get worse how I'm going to cope with it all?

Any advice and help would be greatly appreciated.

Karen

I am sorry for what you are going through. My parents are now both dead, my dad nearly six years ago, my mum only six weeks ago, and there was quite a long time when they were both in very poor health and things were very difficult.

I have told myself that I must never ask my son not to 'put' me in a home, as I would hate to lay that guilt trip on him should it ever be necessary for him to do so. I would also hate him to have to put his own life on hold to care for me, as I know how stressful it can be. I have told him that if I do have to go in a home then he should do his best to make sure it is a good one and visit often enough to try to make sure that I am being well looked after.

I hope you get the help you need. You will get lots of support here.

 

[Libby]

Hi Karen

I've also been in that position - my dad had cancer and mum had alzheimers. Dad kept a lot hidden from us about mum's behaviour and it always makes me feel so sad that the last few months of his life were coping with mum's AD.

Not sure how your dad is with his dementia, but it will take a lot out of your mum, when she's so unwell herself. My dad ended up in Butterwick Hospice for a few weeks, but then seemed to pull round a bit after that.

At least I had brothers and sisters to help out - it must be so hard for you when you're on your own. My mum and dad also lived in billingham, and we arranged carers to come in and help with meals, and dad had a nurse coming in to help him get up in the morning and to help him at night. So there is definitley help available Karen - you just need to make some calls. PM me if you like, and I can let you know who we contacted.

Take care

Liz

 

[florence43]

Brenda,

That's such a lovely sentiment and one that I share. I plan to tell my husband and three children the same.

Karen,

I'm so sorry that your family are in this position. I can relate to it much more than I wish was true. In July last year my dad was diagnosed with lung cancer, but his body was not strong enough for any treatment, so very sadly, he died on October 30th 2009. My mum was in the mid stages of dementia at the time, so the situation was dire.

However, it was pretty awful before then, when dad had a stroke in Feb 2007 and was left with half his body paralysed, and bed-bound most of the day. The SS put a very good care package in place which allowed for both their needs and it continued until we lost dad, and was reassessed just for mum for several more months. She was able to live independently in the family home until her illness dictated it was no longer possible. Mum had a very sudden and serious decline and needed 24 hour nursing care, and now she is in a Nursing Home. She had always been so afraid, and it had made my sister and I afraid too, but when the time came, it was the only way. Unless we could raise the funds for 24 hour care at home, she wouldn't survive with just 4 calls a day. That was the most SS could provide.

But the home where mum now stays is clean, efficient and actually very nice. The staff are lovely and more to the point, they can keep a close eye on mum's needs and her health which was no longer possible at home. So, looking into the future...a time MAY come for this, but try to not be afraid of it. Time really will tell.

For the present, your parents' individual and joint needs have to be assessed, and the right help put in place. It should be treated as if it were you, and that you didn't need to work, and lived next door! What would YOU be doing for them exactly? Shopping? Cleaning? Companionship? Personal care? Cooking?

But you don't need to assess this. Social Services will, with your input. They will review your parents' current situation and speak with them about their needs with a view to making life as easy as possible for them. Keeping people in their own homes is their first objective, so don't be afraid of their involvement.

You (and they) will be included in all decisions as things progress and situations change.

So, if you haven't already, have a chat with your parents about this and say that it would put your mind at rest if you knew that their needs were met on a daily basis. That then frees you up to spend precious, quality time with them both. Then, get in touch with their local Social Services, or speak to their GP to get the ball rolling.

I do hope it all works out ok. I managed, and am still here to tell the tale!!! I hope that gives you hope too!

Take care,

 

[florence43]

P.s.....

One of the carers who helped mum and dad for 2 and a half years still visits mum once a week at the Nursing Home. She's so very fond of her, and takes her chocolates and checks things that we may not think to look for.

She sees mum as part of her family, and we feel so grateful to her. She visits her as a friend, not a carer, but it goes to show how wonderful some of the care workers really are. Maybe we found a gem, but it takes a certain kind of person to do that job, and mum & dad sparked up some lovely relationships over that time.

So please pass that onto your parents and know yourself the reality of the situation from my experience. A lot of good can come out of bad, and the carers can make a great difference to their quality of life...in many ways!

A positive note to end on!!

 

[piedwarbler]

Hi Lacey, I am so sorry to hear of all your worries and I can only second everything Annie has said to you.

I hope you will feel able to talk to your line manager and explain your circumstances. You should be entitled to carers leave which should enable you to have at least the time to make arrangements. I found I had a really sympathetic boss and without that I would have found things a lot lot worse.

Remember to make time to be kind to yourself. This is really important, because if you don't keep well, you won't be able to care in the way you want.

x

 

[JulesLK]

Hello Karen

I know just how difficult this is for you, as I was in exactly the same position a couple of years ago. I was an only child, single, working full time with mortgage etc. My father has AZ and mother was diagnosed with cancer. Sadly my wonderful mum died only 6 weeks after her illness was confirmed.

I can only reiterate the advice already given, that you speak to your Manager and explain what is happening. My employer was absolutely wonderful and supportive, allowing me to work flexibly and apply for dependents/compassion leave. This enabled me to spend as much time as I could with my mum and make sure my dad was looked after.

Thinking of you ....
Jules

 

[Deborah J]

Hi Karen

I sympathise with your situation , especially as you are the only child. My mum has breast cancer and my dad dementia.
Last year was really tough for us all and in the end the only way we could cope as a family was to put my dad in a home. This was a last resort and dad has had the disease for 10 years and mum has been his carer all that time.
If your dad is still mobile , talking , able to feed himself and not yet incontinent.... you probably have many years together as a family before you have to consider residential care.
You must get support from your local social services , by having 1-2 daily visits to check on your parents/bath/ensure they are eating. Focus on the care for your dad , while your mum goes through her cancer treatment.
My mum had to have a colostomy at 32 , for bowel cancer (she had no choice but has lived with it ever since , now 71 ! 18 months ago she had a lump behing her nipple and has had a full mesectomy and chemo and radiotherapy.
Be positive about your mum .... so much can be done for bowel cancer/liver cancer these days.... even if the chemo/colostomy (bag) is the only option.My mum is proof these things can be beaten.
You must ensure your dad gets access to medication..... my dad was on aricept for 6 years and it made such a difference to his life and ours. They stopped this in Decemberlast year , as the benefit of the drug had plateaued.
Additionally , make sure your mum applies for attendance allowance for caring for your dad AND you apply for attendance allowance for caring for your mum. This financial support does help to bring in other services, employ a cleaner , get shopping done/delivered and pay for private or social services carers.
I am single ...... have a very stressful job , live 1 hour from my mum and 1 hr 10 mins from dads nursing home..... so would not have coped without carers going in last year.
My mum can just cope at home ith her cancer treatment which is on-going .... and visits my dad in the home everyday. She hates him being there , but as the disease progresses (we have been on this journey for 10 years now) ,he does nowneed professional care and my mum and I don't have the strength.
You need to keep your job..... for me it is my life line to keep me going .
Good luck and hope this helps.
Deborah J.

 

[lacey1960]

Thank you all for your kind words

I would like to thank all of you for your very very kind words, it certainly helps having people who understand what you are going through.

I have tried to sort things out with my parents but my dad doesn't want to talk about anything and my mam feels she shouldn't either now as she's upsetting my father. I have told her she's okay to talk to me about it as she its wrong to try and bottle up the way she is feeling. I tried to suggest about power of attorney and a living will for my dad especially but my mam just says "do what you think is right" and that's it. She thinks because she's made a will there is nothing else to do now and just keeps saying she wants to make sure there's enough money to bury them!! She's made me promise I won't put them in a home which is hard for me as my grandparents always drummed it into me that you never break promises but should mam go before my dad, I can't see how I'll manage if his dementia gets really bad.

Any way enough of my moans and groans, thanks again for your support, kind words and positive outlooks. I'm going to definitely start the ball rolling on things this week as dad has to go for a brain scan to see how much damage has been done by his vascular dementia and my mam gets the results back to see if she has secondary liver cancer - fingers crossed she's okay. I'm down as next of kin with her stomar nurse as I've explained about dad to them so now I'll talk to Social Services as you have suggested and see what they can do to help out. My parents are going to hate having them involved but I need them to understand that its for my benefit as well.

Thank you all again

Karen xx

 

[Helen33]

Dear Karen,

You are doing a splendid job It must be hard for you because of mum wanting you to promise something that may be beyond your means and that may be your key into getting extra help involved at this present time I'm sure you can state with confidence that you will do your very best.

I will be thinking of you next week.

Love

 

[lacey1960]

Thanks Helen for your support.

I suppose I can only do my best and as others have said, if I don't take care of myself then both of my parents will be affected.

Karen x

 

[Margaret W]

Well, you seem to be a strong and sensible lady. Not that being so comes easy. It's hard work. But at least you're there. I can't offer any practical help, but hope it all gets dealt with and puts you in a position where you can manage.

Love

Margaret