Friends, Family & Carers Forum

[Determined]

Not sure where this fits but kind of a looking after myself process so 🤷‍

Have been for the last couple of years, together with my darling,  supporting my father in law to live at home. After having a heart procedure a over 12 weeks ago (that was supposed to be an over night stay) he has been in hospital with complications both related and unrelated. But the goal was for him to be back at home with us. Up until 2 weeks ago we were planning a family road trip for dad to visit family. 

Well today at a family meeting  that hope was extinguished. The plan now is for a transition to full time care. While not unexpected I am finding it hard to accept that I / we don't have the capacity to support dad any longer.... kind of feel I have failed, if I had done this or that, if I wasn't working I could have done this or that...

And feeling bad for it but resenting somewhat that the though of having dad home with us has darling in the edge of another breakdown. (Not her fault at all). 

And to be fair if we tried and failed I too am at risk of burnout relapse. 

Anyway not wanting to whinge just putting some thoughts down as part of letting go.

I guess I am juat a fixer by nature and when I can't be the one to hold things together then I feel I have failed, even if it is things well out of my control. 

Juat a little overwhelming atm. 

Thanks for 'listening' to my ramble. 

[FloatingFeather]

Hi @Determined,

Thank you for sharing your story with us. Your story hits close to home for me because it is something I (along with my brother) had to wrestle with a few years ago when my father was diagnosed with Parkinson's Dementia and was no longer well enough to take care of himself.  

I think it is a very normal feeling to feel a level of guilt and failure around putting someone you love in full-time care. I know I felt that way too but if I was honest with myself, even if I was physically able I wasn't mentally or emotionally able to take care of my dad around the clock. I had a job and young children at the time and my house design was not disability friendly. I had to think of not only my father's needs but all of the members of my family that would be effected.

After seeing my dad settled in the nursing home I came to realise as hard as it was it was the best thing we could have done. They had around the clock care with staff that were suitably trained to best help my dad. 

I am also a fixer by nature and making the decision was difficult and challenging at the time but if I was honest with myself (as much as it caused me guilt and grief) it was really the best thing for everyone. My advice to you is be kind to yourself and those around you about your decision. How you are feeling (from my experience) is normal and understandable. At the end of the day your dad's health and safety along with those in your family is what should be prioritised and help guide your decision.

From my experience (and from talking to others that have been in a similar experience) your feelings are valid and normal. Just remember you are doing the best you can under challenging circumstances - that's all any of us can do.

Warm wishes,

FloatingFeather 

[amber22]

Hey there @Determined 

Thank you so much for sharing what you are going through and how you are feeling about this. It is so tricky to navigate when you are caring for family members and being that unpaid carer as well as coming from a loving family perspective.

From what you have shared, I want you to know that you have done so much for your lovely father in law and although it can be really discouraging when things like this happen, you have not failed anyone. You have been such a backbone for your family and such a beautiful carer when they have needed you. That is something that so many people would be eternally grateful for (to have someone that cares and loves them so much) so please recognise that, and you have not failed anyone in this situation. It is disheartening to hear that the visit to your father in laws family may not be able to go ahead, but that is something that could be a future hope or something that can hopefully be postponed for another time when it is safer and better for him to travel. 

I am so sure that your family are so grateful for what you do, but please remember to take care of yourself. Caring for yourself while caring for someone else can be really difficult so I've included some links below of some recent Peer Group Chats and a recent Topic Tuesday on the topic of Caring for yourself while being an unpaid carer/ caring for someone else that might be beneficial for you to read through if you have the capacity. 

Here are the links: 

Peer Group Chat on 'Caring for yourself while caring for someone else':

https://www.sane.org/images/peer-support/chat-transcripts/Caring-for-Yourself-While-Caring-For-Someo... 

Topic Tuesday on support for the Unpaid Carer: 

https://saneforums.org/t5/Special-Events/Topic-Tuesday-Caring-For-The-Carer-Tues-29th-November-2022-... 

Sending virtual hugs and I am sitting with you during this, 

Amber22

[Appleblossom]

Hey @Determined 

We have not spoken in ages, but I wanted to acknowledge the importance of this life transition for your family.  The whole Aussie anti whinging thing has its limits too.  Sometimes its important to say it as it is.  In many ways we can be a tough and resilient nation and there are a lot of fixers out there. Wishing your family the best in dealing with it.

[Determined]

Thanks @FloatingFeather @amber22  @Appleblossom 

Appreciate your thoughts and encouragement. 

So the latest is that Dad is now classed as palliative care. We actually thought yesterday was goodbye 😭

But by some miracle there has been some improvement during yesterday and overnight. Dr is amazed and puzzled (in a good way) That could change any time though so moment by moment for now. 

[Gwynn]

I'm so sorry your Dad is now classed as palliative care. Your role as carers isn't ended by not caring for him at home, though, it's only changed. Maybe find some old photos to look through together and talk about?

[Determined]

Important reminder from @Shaz51 here

https://saneforums.org/t5/Looking-after-ourselves/Caring-for-the-carer/m-p/1234373#M31526

Embrace change. Change is constant in providing care. What worked last week or even this morning may no longer be relevant. How well you accept and embrace change is key to staying stress free and being an effective carer.

Know what you can change and what you cannot change. All we can really change is ourselves and how we react to others and to different situations.

[Determined]

And from the don't list 

✗ Think you have control over everything and everyone. Although you will be the decision-maker in many situations, you can’t control the health of your loved one, whether your family will offer support or the expense of care. Being realistic will help you stay grounded.

[Shaz51]

Ohh. Sending you lots of understanding hugs my friend @Determined 

Yes I have had to come to the realisation when the doctors said my mum needed high 24 hour care in aged care home and our home was unsuitable for mum to be in now 

Sooo much guilt I have experienced and still do 

But with my physical health problems getting worse and Mr shaz mental health problems ongoing , it is the best step 

After mum broke her right hip , and then got an infection. Covid19 in hospital and then dementia 

She is now back in our local town aged care which makes it easier for me to see her as well as her sister 

@Gwynn , @Appleblossom , @amber22 , @FloatingFeather , @tyme , @TideisTurning , @billybutton 

[FloatingFeather]

Hi @Determined,

How is your dad going? I'm sorry to read he is in palliative care - that's a lot of feelings and emotions to deal with for all of you, and all involved. I hope you are taking good care of yourself during this difficult time.

Sending you hugs and understanding.

FloatingFeather