When carers fall ill

[father ted]

Some who log in regularly to TP may have seen my posts before. My Mum who has AD lives with me she is 90. I also have a disabled daughter who I have to provide all personal care for. It seemed to me I had a lot on my plate and although I cope, I think very well something has happened now that has knocked me for six.
About 3 weeks ago I went for a routine mammogram. I had not detected any lumps or changes but nevertheless I was recalled to have further tests. Yesterday I had to go of a biopsy and will get the results on 19th May. Because of my caring duties I could not take my husband with me as he was at home caring for my Mum and daughter along with the agency carer. I looked on a breast cancer website and they mention the biopsies as if they are nothing but I found it extremely painful. The whole process took about 40 minutes and if I moved I had to repositioned so the biopsy could be done accurately via a screen and long thing like a skewer. I did have local anaesthetic but it hurt like hell and I went very light headed.
I feel so low. At the moment I am waiting for results and all may be well so I don't want to burden anyone with it apart from my husband but if the tests are positive I don't know how best to proceed. Mum would be capable of understanding but why burden her and also if she forgets and I have to keep going over it That would drive me crazy. When I got told I had arthritis in my foot she refused to believe it was arthritis as I was 'too young' and so simply didn't take it in so every time I limp she asks me 'what's wrong with your foot' and I say it's arthritis and she says your 'too young for arthritis' and so it goes on.
God forbid if I need further treatment I don't think I can go through it with her here. Endlessly repeating questions or looking at me all puppy eyed but offering no practical help or support. And then there's my daughter who cries if I go away just overnight for a break! I have always been strong and coped with their neediness but now I feel so vulnerable because if the tests are positive I will have lots of hospital appts/ treatments etc and need time and space to get my head round it all but in order to do that will have to arrange emergency respite for the two of them and I know how distressed they will be.

 

[Shedrech]

Hi father ted
I can see why you are concerned; you're coping with a lot in your family's circumstances

I guess all rests on the results of the biopsy - just for info, I had a biopsy many years ago and all was well, it was a cyst and was drained
I also about 10 years ago found that I had breast cancer and had a full mastectomy - in fact I felt I came out lucky overall as because it was full, afterwards I had no chemo etc just medication ie tablets - it did though take quite some time to recover as the general anaesthetic takes it out of you and there's the physical recovery to consider and the emotional impact - you really must put yourself first and make a good recovery for everyone's long term welfare

so you are wise to consider what plans you can make for your daughter and mother
respite may not be ideal, but both will be supported and looked after all day every day - you will be able to visit when you have the energy - would you be able to keep in touch with your daughter by skyping?

I don't think I'd discuss any op with your mother - just keep it vague, you will be in hospital for a long while (you won't, but if she thinks you are she may not give you such a hard time) - you will know best what to say to your daughter

I can only hope that no treatment will be required - however, maybe it is worth sitting down and reviewing your situation, putting together some contingency plans for just in case - we never think anything major will happen; sadly it sometimes does

sorry - I feel I'm being no help
much sympathy and sending you positive vibes

 

[Slugsta]

I am so sorry you are going through this. With full responsibility for 2 vulnerable adults I don't suppose you usually have a moment to call your own!

On top of your, natural, anxiety about your own health you have the added problem of wondering what to tell your mother and daughter and also trying to work out how you might get their care provided if/when you are too unwell to do so.

I do agree with Shedrech (I often do!), it is time to put yourself first. Not only for the sake of your mother and daughter but also because you are important in your own right!

I sincerely hope that the tests prove this to be innocent but, if not, you will find lots of support here for your own health problems.

 

[MollyD]

Hi father ted,

Just want to say how sorry I am to hear you've to carry and consider so much for others when what you need is a whole dose of tlc yourself at the moment. Please goodness, the biopsy cones back negative. Still, you could do with some peace of mind in the meantime. ♡

 

[geniemax]

I care for my dad and I also have a thirty year old son with severe learning difficulties although unlike yourself due to crisis when my son was eighteen he has not lived with me but I still spend my spare time with both him and dad it was hard to start with my son living in care but actually we can spend better quality time together and it does mean that if I am unwell in the future that something for him is in place he does still miss me but I speak to him every single day what I am trying to say is what started for us as respite became permanent and although difficult respite can work out for the best to give you the time you need to keep you as a person as strong as you can be both physically and mentally so if you can get help with your daughter take it now for you and it will be in the long run far easier for her than you think I wish you well and hope things turn out to be better than they might whatever happens in the future you have been a truly loving and caring person to your mother and daughter hope all goes well

 

[Gwendy1]

I understand your situation from personal experience. That doesn't help you, I know.. I think, that we can't control everything around us, it's so very difficult. You are in a horrible, 'what if' period. You're stressed out, worrying bout everybody else and absolutely, you're worrying about yourself, your own health. What will be, will be. And there will be an answer. As you know, only too well, your health is paramount. Please take care, be good to yourself. ❤️️love from G. X


Sent from my iPhone using Talking Point

 

[Amy in the US]

Father Ted, I am sorry to hear your news. I am sending you best wishes that your biopsy results are okay and that you are healthy and need no further treatment.

Should you require additional treatment, nobody here on TP would judge you for getting additional help in caring for your mother and/or your daughter. If you don't take care of yourself, you are no good to anybody else.

It can be very difficult with someone with dementia, who isn't able to understand that others have illness and problems and needs as well. I think it's reasonable for you not to mention this to your mother as it would, as you say, only stress you out more. I am sorry that you have to be her caretaker and cannot receive support from her.

Your post is a good reminder that all of us need to have back-up plans in place, when we are the carer for another person. Thank you.

Please take care of yourself and I will be thinking of you.

 

[Aisling]

Some who log in regularly to TP may have seen my posts before. My Mum who has AD lives with me she is 90. I also have a disabled daughter who I have to provide all personal care for. It seemed to me I had a lot on my plate and although I cope, I think very well something has happened now that has knocked me for six.
About 3 weeks ago I went for a routine mammogram. I had not detected any lumps or changes but nevertheless I was recalled to have further tests. Yesterday I had to go of a biopsy and will get the results on 19th May. Because of my caring duties I could not take my husband with me as he was at home caring for my Mum and daughter along with the agency carer. I looked on a breast cancer website and they mention the biopsies as if they are nothing but I found it extremely painful. The whole process took about 40 minutes and if I moved I had to repositioned so the biopsy could be done accurately via a screen and long thing like a skewer. I did have local anaesthetic but it hurt like hell and I went very light headed.
I feel so low. At the moment I am waiting for results and all may be well so I don't want to burden anyone with it apart from my husband but if the tests are positive I don't know how best to proceed. Mum would be capable of understanding but why burden her and also if she forgets and I have to keep going over it That would drive me crazy. When I got told I had arthritis in my foot she refused to believe it was arthritis as I was 'too young' and so simply didn't take it in so every time I limp she asks me 'what's wrong with your foot' and I say it's arthritis and she says your 'too young for arthritis' and so it goes on.
God forbid if I need further treatment I don't think I can go through it with her here. Endlessly repeating questions or looking at me all puppy eyed but offering no practical help or support. And then there's my daughter who cries if I go away just overnight for a break! I have always been strong and coped with their neediness but now I feel so vulnerable because if the tests are positive I will have lots of hospital appts/ treatments etc and need time and space to get my head round it all but in order to do that will have to arrange emergency respite for the two of them and I know how distressed they will be.

Oh Lord help you Fr. Ted. Yes biopsy can be very painful as you know. I imagine the emotional strain and worry now is horrific. Please try to get respite for your Mum and daughter as you need head space now. Lots of prayers from Aisling

 

[father ted]

Thank You

Oh Lord help you Fr. Ted. Yes biopsy can be very painful as you know. I imagine the emotional strain and worry now is horrific. Please try to get respite for your Mum and daughter as you need head space now. Lots of prayers from Aisling

A big thank you to all of you that have responded with kind words and thoughts. I can't tell you what it means, when I get a quiet moment, to sit down, open up my computer, log in and see a load of messages from people who I have never met and yet know my most intimate worries and take the trouble to respond and support me.
I am so grateful. I will let you know the outcome.

 

[jknight]

A big thank you to all of you that have responded with kind words and thoughts. I can't tell you what it means, when I get a quiet moment, to sit down, open up my computer, log in and see a load of messages from people who I have never met and yet know my most intimate worries and take the trouble to respond and support me.
I am so grateful. I will let you know the outcome.

Big hugs from me, as well!

 

[Lawson58]

How long will it take to your results back?

The waiting time is awful. I had a biopsy done several years ago but I could never say that it was painful at all. And my lump turned out to be a fibroid adenoma which is harmless and still there and is absolutely no problem.

I do hope everything turns out well for you.

 

[velocity]

Sorry to hear your not so good right now, I hope all goes well for you xx

 

[Amy in the US]

I think the waiting (for biopsy or other test results), is just awful.

I know it will be some time yet before your get your results, but just wanted to let you know I was thinking of you today.