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Hello - Carers UK Forum


Tell us a bit about yourself here.
OK I am a mother of two grown up girls, and a grandmother and I work full time.

My youngest daughter was diagnosed as a toddler with kidney disease, age ten she had a transplant, age 15 she was diagnosed with cancer, four years ago her transplant failed, she is on haemodialysis three times a week. last year she had an infection of the heart, the mass was excised and she survived. She has none fused/healed bones, her collar bone broken over 18 months ago and her sternum after the heart op, its held together with wires. she has several bone diseases. Her joints are falling apart as a result of steroid therapy since she was a toddler. She keeps getting systemic infections which land her in hospital about every two or so months. The last one she she spent five days in intensive care. She still lives alone. Her flat mate turned out to be a thief, stealing from her using my daughters credit cards to the tune of about 8,000. Since November I have had the flat mate moved, I have sorted out all her accounts, we allowed her to go for bankruptcy, I have sorted out all her benefits and I think that she gets everything that she is now entitled to, I have taken over the collection and administration of all my daughters opiates that she gets for pain, I see her almost every day, if I do not see her some one else does, and we talk and text everyday. I clean her house, do her laundry, and try to do the same at mine, and I work full time. She goes to dialysis twice a week by transport, and onece a week we take it in turns to take her, this as much as anything so that we stay in touch with the dialysis nurses, and to spend some time with my daughter. We arrange for her to come and stay every now and then but she often changes her mind right at the last minute. My daughter is suffering from depression (not suprising), but a lot of the time I do not know what to do for the best. She is starting to refuse treatment for some things as she knows that treatment may shorten her life further. She also knows that one day she will not survive her high potassium spikes, her heart will not take it. She may also now have liver disease, waiting for an appointment for scan of liver and the veins into it.

I am so very tired, emotionaly because in the last three months there have been two occassions where we were being prepared for the end, she has cheated death so many times - we were told that she would not survive her cancer, we were told that there was a very good chance she would not suvive her heart op, actually I thought she would die on me as I was driving her to hospital for that heart scan - she didnt leave hospital for 12 weeks.

I am also tired physically - there is only so much a late 50's body can cope with.

Sorry this is so long, maybe too long for an introduction, sorry.
Hi Mari,

Welcome to the forum.I hope you have gained some relief by the sharing of your familys' tale.
Please post as short/long as you like about any concerns that you have.We are all here to get/give support and hopefully receive some strength by sharing experiences with others who can relate to all we say.

As detailed as your post is, I can only imagine that you have barely touched on all you have been through with your daughter over the years.For me, I always found the mental tiredness harder to recover from than the physical side.However we do recover Mari,till the next time,and the next and so on.It amazes me the inner strength that carers have.

I hope now that you have joined us that you will let us support you as best we can.Look forward to getting to know you more.

Be strong
x x x x

Hi Mari. Welcome to the forums. Your daughter has really been through it hasn't she? And you've been there for her right through. What a wonderful mum you are.

What an awful flatmate she had. Some people only think of themselves don't they?

I know what you mean when you say there is only so much a late 50's body can cope with and I'm early fifties. It is really hard sometimes.
Hello, Mari, and welcome to the forum. Sorry I missed you earlier.

You're right. Caring - especially when things are so difficult - is physically and emotionally exhausting. As Rosemary says, the physical tiredness is easier to recover from, but it's still no picnic.

Try to take the time to take care of your own needs, too. Even a few minutes can make a difference.
Hi. mari, My OH is epileptic and he was given a little advice from a doctor which I hope will help you as it has helped both of us: Take every day with each other as a sign, live every moment to the full and laugh at every obsticle.

After this, eventhough things have not got better it does help to make each day a little brighter and easier to cope with. It doesn't help the tears or worry during a seizure but it does help me to carry on.

I hope all goes well. Am sending you a big hug with this post.
Hi Mari
Bless you, you have alot on your plate .
Best wishes and hugs
Cheryl x