SELF CARE FOR THE CARER

30/1/2019

Often with an ageing couple, one person deteriorates faster than the other and then the healthier partner suddenly finds themselves as the primary care giver sometimes with no prior experience or training in looking after someone who is approaching end of life. As a carer, it is not only important to know how to truly care for someone else but also how to truly care for yourself.

Some days are really bad and it is challenging for a carer to watch a loved one in distress not knowing if they are going to die today, tonight, in a few months, or in a year’s time.

The carer needs to take great care to support their body because they have to be fit enough to handle these emotional ups and downs as well as being physically fit to do all the necessary tasks.

The more carers can support themselves, the more easily they can cope with the challenges each day presents.

Please join our conversation topic for this month and share any experience where you have been in the situation of caring for a sick or dying person and if so, how did you cope?

You may also like to read this month's articles 'Good Days and Bad Days' and 'No True Care without Self Care'.

24 Comments

Gayle

31/1/2019 11:36:59 am

I have never been in a position to 'care' for others who are dealing with a long term illness or the final decline. But I have many friends who are in positions of being carers and, as an observer, it is often much easier for me to see how they are wearing out or burning out. Perhaps one way I can be of help is to invite that carer out to lunch or a movie and support them to find a way to make this time available for themselves. This is a wonderful conversation to have. I hope people who are caring for others can find the time to participate in the discussion.

As a mother, of course, I was constantly dealing with a child with the flu or the measles or a toothache. And with four children, yes, I was often exhausted. The thought of taking care of myself never even occurred to me!

Joan Calder

9/3/2019 10:48:05 pm

I've been a carer Gayle, I nursed a terminally ill husband for sixteen months and absolutely exhausted myself. I ended up drained and depressed and am still aware of the impact of it on my body 16 years later. I did have kind friends who gave me some respite and we enjoyed things together, but the real problem for me was that I had no idea how to ask for what I really needed, and also I was too attached to supporting my husband 24/7. The anxiety about "doing it right" was predominant, and terror of giving him the wrong medication. I would have liked someone to help me find a way of organising all this, and the nursing care, instead of taking it on blind. At the time I had no idea of how to ask for that, in fact felt there was an expectation I should know and not look silly. So really it was uncleared old patterns from my schooldays that were affecting me and not knowing at the time how to clear them. I have to appreciate I did well with the skills I did have, and the loving relationship with my husband which enabled a deepening relationship with each other, and now, looking back, to pay more attention to those than the "failings". I would suggest to anyone who is caring to ponder deeply about what they truly need, and give themselves space and time away from the task, and look after themselves first.

Gayle

10/3/2019 10:04:48 am

Thank you Joan for sharing your experience which is a much needed contribution to this conversation. There is so much in what you've said but to highlight a couple of things that seem super important to me.

That you didn't know how to ask for help when you needed it and didn't feel that it was ok to ask for help. Wow! I am sure there will be many carers who will be able to relate to this. I did have a friend who recently broke both her arms in the same fall so she had no choice but to ask for help. When I was helping her shower one day, I knew the hardest part of two broken arms ,for me, would be to ask for help!!!!

The other really important part of your sharing is when you talk about not staying focused on your 'failings' but instead on the truth that you did the best you could with what you knew. I have written a blog called 'No Regrets' which will be published on Joy of Ageing Esoterically in the near future. You are the living example of what it is about.

ruth anderssen

10/3/2019 02:37:00 pm

Joan, your comment stirred quite an emotional reaction in me as I could picture myself in the same situation as you experienced taking on the nursing, caring and being the 'solid rock' for your partner during his dying process. The anxiety of 'doing it right' and that my family would acknowledge that I was there for him until the end would be my 'payment' for soldiering on without asking for help and or support. We have been married for 52 years and I would have seen it as my 'duty' to look after him at home, however, I have found reading these blogs and comments have impacted on this way of thinking and I will be much more prepared to bring a deeper quality into both caring for my husband and for myself as his mind, body and health deteriorates.

Annie

10/3/2019 03:48:48 pm

Gosh reading your story Joan brought back a situation I was in 25 years ago when my then husband had major surgery to his back. Being quite a young woman, I felt that I had to do everything myself. However it was more than that, I felt that I had to prove to everyone just how capable I was. I actually blocked people from assisting me at that time, not wanting anyone to interfere. I was running the home, looking after 2 small children, working part time as well as trying to keep our small business a float. I was totally exhausted and did not even think about my own care at all. This period in my life was almost a year in total. I realise now that this occurred because of my own lack of self worth and insecurity. If this situation were ever to arise again, I would not block anyone out, I would lovingly welcome every support offered and would not be ashamed to ask for assistance.

Gayle

14/3/2019 10:03:15 am

Annie, you've raised another point that needs exposing in this conversation - that being the issue of lack of self-worth and insecurity. Of course, we are all worthy of seeking and receiving help, especially when we need it. But many of us are / were programmed to not have a sense of our own self-worth, having been told instead that we were helpless sinners - or whatever other demeaning propaganda we were fed. It naturally follows on from there that we are not worthy of receiving help and how dare we ask. So we have to unwind bad programming from church and parents before we can scratch the surface of concepts like self-care for the carer!

Patricia Darwish

5/2/2019 04:04:41 am

25 years ago I went back home to care of my mum dying of cancer. The days spent in hospital were very depressing and exhausting. I was not equipped to offer the best support to my mother nor myself. I was unable to seek support.

Some years ago I took care of my father and was better able to handle the various stresses because I understood the importance of looking after my body. The emotional anguish I had experienced with my mother was replaced with an acceptance of the situation so the care I offered my dad had a different quality.

Many years had passed between the two events but having found Universal Medicine I saw life with a different lens.

Annie

6/2/2019 12:23:54 pm

Although I have never had to care for anyone in their last stages of life, I did in fact watch my mother do this for my father. It was much easier for her once he was put into care, if this hadn't of occurred I feel she may have gone before him. We were able to place her in a retirement village next door to his Nursing home and every day without fail she would go and sit with him for a couple of hours. She would not have missed this for the world. What enabled her to do this though was due to the fact that she was able to go home and care for herself. She had put in place a rhythm and routine that provided her with this opportunity. I guess she was one of the lucky ones, not being the main carer but a support for her husband.

ruth anderssen

10/3/2019 02:14:23 pm

Annie, what a perfect arrangement for your parents to be in, especially for your mother as she faced the death of her husband. For your mother to be able to still visit him daily and lovingly care for him whilst having the support of nursing staff would have made his passing a much easier path for her. Whilst this supportive pathway is not available to everyone, it is clear from how you have described your mother coped, that it is a much preferable dying process for all concerned. Unfortunately, there is a propensity for many carers to insist they can look after their loved ones and don't need any help or support -- I wonder if this is this because many long term partners feel it is their 'duty' until death do us part? Is there a sense of 'guilt' if we ask for help?

ruth anderssen

10/3/2019 02:23:00 pm

Thank you for your comment Patricia and I found it very enlightening to read just how differently you were able to be the carer for your Father than you were able to cope with your Mother's dying process. You describe how you felt you were much more equipped to handle the various stresses during your father's dying process because you understood the importance of looking after your body. This is such a powerful comment and really does give people who are in the position of caring for a loved one an understanding of just how important it is to Care for Yourself both physically and emotionally. I feel you have also expressed that when you have a deep understanding of the cycle of life and death that you are able to support your loved one with a deeper quality of love .

Annie

10/3/2019 03:55:39 pm

Hi Patricia, thank you for sharing your story about the difference between the care you gave to yourself when looking after your mother and then your father. Two very similar experiences for you and yet when we have more understanding and love and car for ourselves the outcomes can be so very different.

bernadette link

15/2/2019 08:45:06 am

When my husband underwent open heart surgery I was suddenly having to adapt to caring for him, and I realised and appreciated how much he supported me, with grocery shopping, maintaining our home, domestic chores and more.
I realised how important it was to look after my own well-being so that I could offer him the best care. Exercise, sleep and nourishing food as well as maintaining my own commitments where that was possible, became super important. Taking time to be with him and simplifying my life with this priority has deepened our relationship. I now realise how challenging experiences are opportunities for greater understanding and appreciation of what each day brings.

ruth anderssen

10/3/2019 03:24:26 pm

Thank you Bernadette for sharing with us just how you found it important to give yourself the space and time to remain healthy throughout the rehabilitation period after your husband's surgery. Focusing on exercise, sleep and nourishing foods is good advice, as is the fact that you were able to build in time to maintain your own commitments. As wives, mothers and partners we tend to put ourselves last, or at least way down the list, when we are in the position of having to care for others on a daily basis. Your posting has confirmed the importance that carers must place on ensuring they are caring for themselves as well as providing nursing and loving caring for those who are sick or dying.

Deidre Medbury

15/2/2019 02:37:33 pm

I work in the community in Aged Care which includes a lot of physical work and have discovered through my own experience how essential it is to take care of myself before I can possibly apply true care to anyone else.

My back had been telling me that I wasn't taking care of myself but because I was ignoring the signals it was giving me, it suddenly gave out. I was in a lot of pain, not able to work or do anything at home either for over a month. During that time I had plenty of space to reflect on why it hadn't actually 'suddenly' just happened for no reason. It was that I had been dismissing the signs it was giving me until my back / body couldn't take it any longer and put a stop to how I had been treating myself. I am now applying a gentle exercise program to my daily self-care rhythms to help recover, not just to be without pain. I have discovered by being more aware and caring of myself, it supports me to be more caring of others when I'm at work.

Gayle

1/3/2019 09:48:35 am

I recently watched the final episodes of an American television series called The Big C. Laura Linney plays a woman in her forties who is dying of cancer and the show encompasses her process as well as those of her family members. Not having had this experience myself, either dealing with a terminal illness nor caring for someone who does, I have limited exposure to what this is like for those involved. This series was well done and gave me a glimpse into the different emotional phases that everyone goes through especially as carers. At times carer's are in denial or they just don't want to talk about it, consider it morbid, and squash any attempts by the ill person to talk about it. At other times, they collapse into the grief of losing the person they love. There is a phase where the carer is scared, scared of the responsibility of caring for another who is dying. What if they don't do things right, what if they give the wrong medication, what if the person falls on their watch, what if... I've always been aware of the person who is dying as being in a big process but didn't fully understand or appreciate what it means for the carer. It is now obvious to me that being a carer is a big task and caring for the carer needs to start with self-care.

Jennifer

2/3/2019 04:55:19 am

As a health professional who works in the community setting, I have the absolute privilege in working with carers everyday. I walk along side them, provide education and support. I am blown away everyday by their capacity to just get on with things, but also to be able to get on with what's important, for the "extras on top" simply have to wait. Something that I have observed over this time is how important it is for a carer to appreciate themselves in all that they do. So the person they are caring for simply wouldn't be able to remain in their home if it wasn't for the person in the role of the carer. Everything the do with such grace and care, and also great honesty. Being 'sick' helps us put life into perspective, but so to does being a carer. I personally love working not only with patients but also family/carers. I have learned so much from them, how to love with no bounds, how to be in a situation that cannot be fixed and how to value everything we bring no matter what circumstances we find ourselves in.

Gayle

2/3/2019 08:20:08 am

Thank you Jennifer. This is a wonderful acknowledgement of the 'grace and care' that the people looking after the ill or incapacitated bring to the situation. They are a reflection of humanity at its best.

ruth anderssen

10/3/2019 02:58:11 pm

Jennifer, you sound like the 'angel' that every carer needs to have in their lives as they look after a loved one who is sick or terminally ill. It is your kind of support and appreciation that we need to give to the many carers who make it possible for people to remain in their own homes. When carers are appreciated and acknowledged for their commitment to nurse and care for a loved one, it is probably all the 'thanks' they look for - we need to show our carers appreciation, appreciation, appreciation and for not to view it as it being their duty to be their loved one's carer.

Gill Randall link

2/3/2019 07:47:55 pm

I was part of a team caring for my mum a few years ago. There was a lot of tension around at that time too, trying to get the balance of caring for myself and my family and looking after her. There was a pull of guilt that I could do more for her at the expense of myself, especially when things went wrong, she had a tendency to blame me. It brings up what the relationship was like before she became unwell, and we needed to sort out some unresolved issues. Her final 2 weeks was a precious time where it felt we had a very loving relationship.

Loretta (Rappos)

3/3/2019 04:03:28 pm

I remember my 2nd yr of nursing when I was looking after a woman with end stage or terminal breast cancer. She was very frail, emaciated, had a large protruding abdomen (ascites). She was on nasal oxygen. I remember feeling very inadequate and uncomfortable because as an inexperienced nurse I didn't know how to make her "better" or "fix" the situation. I felt sorry for her (went into sympathy) because she was young and dying. I know it didn't help the situation. I remember she was semiconscious and waited until all her family arrived at her bedside before she passed over. I do remember holding her hand before the family arrived and felt the love in her heart.
I was not given any support from my nursing superiors at that time.

Gayle

8/3/2019 07:32:48 pm

It is great to see that there are leaders in the medical field today who recognise that there has been a serious lack in the training of our doctors and nurses - about self care. And as your story so clearly indicates Loretta, a lack of support for what medical professionals are exposed to on a daily basis. Are you aware of the website called To Medicine With Love https://tomedicinewithlove.com/, written by doctors casting a larger net about supporting our medical practitioners.

Annie

8/3/2019 08:47:48 am

Thank you Loretta, your comment brought up so many aspects for me. Was there any training throughout your Nursing course that covered what one should or could do in this situation? Even with your lack of experience your inner knowing showed you how to give this woman some support during her final hours and the beautiful gift you received was that you could feel the love in her heart.

ruth anderssen

10/3/2019 03:13:36 pm

I volunteer in my local hospital and as part of my volunteer role I visit patients who are in the palliative care rooms on the General Ward. I often am able to give the patient hand and or foot massages which is greatly appreciated by the family who are usually at the bedside. Whilst I am massaging it allows the family to have time for themselves to take a walk in the gardens or have a rest or whatever they need to do for their own self care. I am constantly in awe of the senior nursing staff who nurse the terminally ill patients as they bring a deep quality of understanding and love to the situation. However, I also watch our young nurses do their 'job' when nursing these patients and feel they do not have the same life experiences to understand the dying process. Perhaps, additional training would help them to bring a deeper quality to their interactions with these patients . . . but how to you 'train' someone to accept death and the dying process? Is it not, as Annie has commented, your 'inner knowing' that is the quality you bring to your patients.

Annie

10/3/2019 04:06:46 pm

Yes there is that inner knowing for sure, but it is learning to listen and trust that feeling as Loretta did, that showed her how she could assist this dying woman. As we travel through life we all gain so much wisdom along the way, which in turn we can then pass on to the younger carers/nurses. I wonder if the younger ones get the opportunity to work with elder people in these situations to be able to just observe the care that one can give. The care that does not come out of a text book or a University Professor.

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Photos copyright © by the photographers: Alan Johnston, Clayton Lloyd, Dean Whitling, Desiree Delaloye, Iris Pohl, Steffi Henn, Steve Leca ,
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