My Gorgeous Mom

[intelekt]

Hello everyone,

I've been reading a lot of threads on here about all of your different heartbreaking stories, my heart goes out to you all..

My story begins on the 17th September 2012, my mom had been having digestive troubles for around 3 weeks before this, and finally agreed to go to her GP on the 17th..

He sent her for tests in hospital, suspecting a bladder swelling!

Anyway we were there all day before I finally had to leave her there at 10pm at night to be admitted for further tests.

I was scared as the doctor said she could feel a "fullness" in her abdomen!

She had her CT scan on Tuesday 18th sept, but doctors being slow didn't come around to see her, so she had to stay overnight again.. The next day Wednesday 19th September was the day our lives were smashed apart with this horrible news.

My mom was told they had found masses in her abdomen, which had mets to her liver, bowel lining and upper and lower intestines, and was likely caused by a primary pancreatic mass.

We had to wait until last Tuesday, the 2nd October to see the consultant, and he basically told us the same things and referred us to a palliative care team which would be in touch.

A Marie Curie nurse called today 5th October, and said she would be visiting us next Wednesday the 10th of October.

That's the facts... The matter of fact practicalities that don't show the human side of things!

My major concerns are mainly how slow doctors are moving, they don't seem to think there is any urgency, but there is, this is my moms life in their hands!

Writing this is helping me to grasp the facts of what has actually happened to us, but since the 19th September our lives have been a total mess!

We are a very small family, there is only myself and my wife and we both live with my mother in her council house.

Ever since that horrible day I have been so tired, falling asleep all the time, and not wanting to get up in the mornings to face the day.. I have been on auto pilot living in a total blur of existence, frantically trying to do normal things but can't.

Our lives have been smashed apart, my mom has this disease and we are so scared of losing her... So scared of losing our lovely home which is in my mothers name.. Scared of losing our entire lives.. I have lived with my mom all my life for 41 years and in this house for the last 36 years.. I just can't even begin to think about losing our house, I feel so selfish thinking of these stupid practicalities while my mom is suffering.

She is my life, my everything, my rock, and now she seems so distant and zoned out, tired all the time, getting pain when she eats... Not that she has eaten anything for the past week.. Apart from one glass of complan a day!

My wife and I both have our own problems and have relied heavily on my mothers support for many years, my mom is the one that fixes things, that makes things better! I have been my moms carer for many years as she has always had arthritis, and has had rheumatoid arthritis for the last 5 years also.

Both my wife and myself suffer with really bad anxiety, plus I also have severe OCD which I am on benefits for, so the total lack of support we have had this far has hit us hard..

I find it really hard to speak on the phone, not remembering things afterwards at the best of times, now bang! We are in at the deep end, having to think the unthinkable and take over everything..

I'm sorry if this is getting mixed up, I just don't know where else to turn and can't think straight...

I just wish someone could come and sort things out for us, we are just numb, we need help with benefits but Macmillan cab aren't calling us until 16th October.. We need to keep our council house and are so scared of losing everything else as we'll as my mom.

GP's are so hard to get hold of, and the district nurse isn't coming until sometime next week. My mom isn't eating a thing but we are keeping her well hydrated.. She keeps saying that she can't lean forward because her belly is getting in the way, I don't know exactly what she means by this but I'm assuming its swelling of the masses or something else?

I think I've forgotten a few things, but I'll add them later..

Thank you for reading

Adrian

[susikus]

Oh Adrian, I am so sorry to hear your story. You have found yourself in a very hard place and it is such a shock. I wonder if you found writing it all down helpful? I know that I did and I am now keeping a diary.

There are people who can help you. It's going to be a question of the right person for the right help. You've mentioned some of them already. It might be helpful to separate out the sorts of help you need as no one person will do it all.

Is your mother in pain, nauseous or vomiting? How are her bowels/her mobility? These are things the GP and district nurses can help with - if she needs help ring and ask for a visit. I know you find it hard to use the telephone so try writing it down first. Or do you have neighbours or friends who could help you with ringing?

Then you are right MacMillan CAB will help you with the benefits and money side of things. You can claim the Disability Living Allowance - or your mother can - she may be already doing so. But now she may be able to claim a higher rate.

The Marie Curie nurse will help with how you and your mother are feeling as well as some practical stuff. Once you are in their system you will have someone you can call on every day. And that is just a few days away.

This is all such a shock isn't it? I know that you knew that it would come one day but it still feels like the end of the world. I wonder Adrian if writing a list of all the things you have to do or ask or find out would be helpful? I write lists for even small things and it does make me feel better when I can cross things off my list. And I think you have to forgive yourself if you don't do it all - there's always tomorrow...

There may also be a carer's association where you live - you are your mother's carer - you could ask your GP surgery to put you in touch. Where I live we have a voluntary centre who coordinate all sorts of services from travel to gardening to help with benefits but I know that it varies in different parts of the country so you need to find out what the system is locally to you.

And you can keep talking to us, asking questions, telling us how you feel and what is happening. I know I haven't covered everything and if I could come and give you a hug and a helping hand I would. Love to you, your mum and your wife and good luck with it all. xxx

[intelekt]

Hello,

Thank you for a lovely reply susikus, it helped me loads reading your kind words..

I think I forgot a few things last night, like saying my mom is 80 years young, and she is already on attendance allowance at the higher rate, so am I right in thinking that she won't get any further benefits than this? Her GP told her to get a form and tick the special circumstances box to get attendance allowance quicker, but as she is already on it and he didn't know this, we didn't bother..

Anyway today has been a hard day.

My mom was so weak this morning that she didn't make it to the bathroom in time... So I helped her downstairs to her sofa. She told me to go back to bed as she wanted a nap in the chair, so I did. When I got up she was still the same, but we were worried about her abdomen as it seemed to be swelling, and also her feet had swelled, so I contacted Marie curie to see what I should do.. They finally sent the district nurse around who assessed my mom, she has arranged for a carer to come in the morning to help her with washing and stuff, plus she also said my mom had oral thrush!!! I don't know where that came from.

The nurse sent for the badger out of ours doctor to see my mom, and an hour later he turned up.. He was the nicest of all the doctors we had seen so far, he said my mom had a mild chest infection and needed antibiotics.

But on the way out he asked to speak to me alone.... My heart filled with dread.. I couldn't believe this was happening.

He told me that she was poorly, and that her care was going to be palliative, which I already knew but I think he thought we weren't aware of the facts... He said her immune system was compromised, and more so because of the anti rheumatoid drugs she is on...

Such a scary day.

She is so pale and weak, but seems a bit more with it since we have made her drink more water.

A frantic dash to the chemist at 6pm tonight to get the antibiotics, which the first chemist (boots) didn't have supplies of, so we ended up at sainsburys who luckily had got all of the prescription.

I don't know for sure if a carer is coming in the morning as they kept fobbing the nurse off (her words), but she said she would sort it..

I feel bad because I can't cry today, the doctor said that her swelling tummy may get worse because of her condition, and I am now worried about her being on methotrexate for the rheumatoid arthritis, as this is an immune suppressant.

It's all gone downhill so fast... She can't even get strong enough to try chemo... Has anyone else been in this bad position and managed to control the symptoms and get a little better? I am so scared for her... Scared that she wo t be able to get over even the first hurdle.

Thanks for reading, and i hope you all had a better day

Adrian

[susikus]

It does sound like it was a hard day Adrian, but also that you did really well to look after your mum, and get her the help she needs. I am sorry that she seems to be getting worse quite quickly. We cannot predict what will happen - she might rally and become stronger or she may quietly slip away, bit by bit. It is so hard to be her son, love her and let it happen (as if you had any choice!).

Re other parts of your post - I think you are right about the higher rate DLA - but it would be worth asking MacMillan CAB if there are any other benefits to which you or your mother are entitled but not yet claiming - every little helps.

Thrush - it is around us all the time and our healthy bodies have no trouble fighting it. It is a sign that your mum is very poorly and her immune system is unable to keep up, so the thrush gets a chance to grow. No-one has infected her - the organism lives on us all, all the time, so please don't worry that you or your wife have 'given' it to your mum.

I hope that the antibiotics help and that you have lovely carers to come and help you and your mum. Look after yourself as well Adrian, don't forget to eat and drink yourself, and let us know how you are getting on.

Hugs, Sue