Friends, Family & Carers Forum

[Jane3]

I care for my Mum who has chronic kidney disease. Not yet on dialysis but she is feeling very unwell every day. She is usually upbeat but she has recently changed and is irritable and very snappy with me especially if I show concern for her well-being or try to help her in any way. She will not talk to me about how she is feeling but she will talk to my sister on the phone. It is like she is shutting me out and treating me like an enemy. It is very upsetting for me. She is pushing me away and it feels like she is turning against me when all I ever do is try to help her. We used to be close but I feel a distance now. She doesn't want me asking how she is feeling. When I ask her she snaps at me and tells me not to take any notice of her and not to ask. I explained to her that if I don't ask then it will seem like I don't care about her. She says she is sick of herself and that I must be too. I tell her that is not true and I am not sick of her. Has anyone else gone through this kind of thing as a carer? It has happened so suddenly and I don't understand why.

[NikNik]

Hi @Jane3

I'm so sorry to hear about your mother. You seem like such a caring and compassionate daughter - your mum is very lucky to have you.

Sadly, it's very common for people with a chronic illness to experience depression. Sometimes this can be long lasting, sometimes it's up and down and other times it be very infrequent and periods of depression can be short lived. It's different for everyone. I wanted to raise this because you mentioned she says she's 'sick of herself' and chances are that she may be experiencing depression.

I'm not sure how helpful this is to you - but I want you to know, it's not you - it's something she needs to take responsibility for and seek help for. Unfortunately she's taking it out on you.

It sounds like she doesn't want help right now, and unfortunately we have to respect that. As long as our loved ones know we are there if they need us - that's all we can do.

Could it seem like she's getting on more with your sister on the phone because she's not physically there with her and being a "carer" for her?

Something we talk about a lot in these Forums are boundaries and self care. Sometimes caring for ourselves is the last thing we want to do - because we just want to care for our loved one. There's some great discussions you can have a look at about self care-

This one was started by @hopeandsupport and @CherryBomb posted a very practical self care discussion here

Seuss started a great discussion about boundaries here

Does anyone else have tips for Jane3 or are experiencing a similar change with the person they care for?

[Sky]

Hi @Jane3,

Welcome to the forum.

I agreed with NikNik. At times it is more difficult to family members who are actually living with their loved ones who need care for. You're the one who faces all the emotions and everyday needs first hand. It must be hard for you since it happened so sudden. I hope you found the suggestion and links provided useful.

On the other hand. It would be hard for your mother too because it sounds like she is also experiencing low self-esteem and thinking she's not worth for your care. It is quite common in people who are experiencing long term chronic disease because they may feel that they're a `baggage' for people around them.

Please look after yourself so that you have the energy and a positive mind set to care for your mother. Maybe you can talk to your sister to see if she's in a better position to pass on some more positive message to her?

Family connection is a powerful thing for people who are not well so hang in there. She is very lucky to have a daughter like you.

Take care,

Sky

[Jane3]

Hi NikNik, thank you for your kind words. I kept thinking I was doing something wrong and I thought I was doing something to irritate Mum or I was being too bossy with her especially when I can see that she won't agree to any of the suggestions I make about managing her pain. When you said it is not me it made me feel so much better and your words have given me strength to keep persevering and trying to make a positive difference in her life. I have high expectations of myself to be able to fix everything for everyone and I often neglect my own needs. The links you provided for self-care and boundaries also helped a lot. Thank you so much. I have decided to try some different strategies like not making her illness the main focus and accepting her decisions regarding management of her condition. She wants to help with household chores and I usually try and stop her because I don't want her to tire herself out. I need to hand back responsibility to her for her well- being and let her decide what is too much for her.

[Jane3]

Hi Sky. Thank you for your reply to my post. I was feeling very upset when I wrote it. You gave me a very good insight to how chronic illness affects people. I could not begin to imagine what it is like for Mum and I wish I could take the illness away from her. I feel sad that she can't do all the things that other people her age can do. I know I have to concentrate on the things I can do to help her and make her like better. My sister is a good support and your suggestion of talking to her is a good one. My Mum listens to her probably because she is the eldest. It will certainly lighten the emotional load. Thank you so much.

[NikNik]

Anytime @Jane3 🙂

So glad you found our advice helpful.

It is SO tough watching loved ones go through illness - I know that sense of helplessness. I think we tend to over compensate when we feel this way, with good intent, compassion and love.

I hope you make time for yourself - sounds like you deserve it. Will you make that commitment?

[Jane3]

Hi NikNik. I am working towards making that commitment. I am working on dealing with guilt when I take time out for myself. It does not come easily. I will build it up as I go along so it is gradual. Thanks again for your advice. It has been very helpful.

[Shaz51]

Hi Jane3    welcome to the forum, I have Kidney disease stage 4 with only one kidney ,and my hubby has Depression

My hubby has a lot of worries and me as well , but I can say to him I need to rest today because of the kidney , your mum will get to know when she needs to rest or keep going .

I have decided to try some different strategies like not making her illness the main focus and accepting her decisions regarding management of her condition. She wants to help with household chores and I usually try and stop her because I don't want her to tire herself out. I need to hand back responsibility to her for her well- being and let her decide what is too much for her.

how are you going ??

[Jane3]

Hi Shaz51. Thank you for replying. I think Mum has anxiety as well. I am not sure if that comes with the kidney disease or if it is something separate. I try to keep it light hearted and keep her laughing. She is starting to accept her limitations more but she does become frustrated with herself and says things like she is useless. She likes to look after others and that's how she defines her self worth. I tell her she has a lot to contribute and then give her examples. I find that changing the subject helps. I can't begin to imagine what she is going through with this illness and she doesn't like to talk about it. I wish I could take it away from her. What kinds of things help you with coping? How can I help her more and what are the right things to say?

[Shaz51]

Hello @NikNik, @Sky , that was great advice , thank you ,

Hi @Jane3 being positive , having support , I have my mum who is a very positive person , I ring her up or visit her when i am feeling a bit yuk .

What @NikNik and @Sky said i will have to remind myself as well