caregiver burnout!

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Occasional Visitor

caregiver burnout!

Hi, new here & cant find anything close to what we're going through....I am an apodted niece (41yr old) to the greatest uncle 1 could imagine. He made life livable for awhile in an adoption gone horribly wrong. A spot was found on his lung Feb 2017. He either didn't understand the weight of that or chose to ignore it. Feb2018 it had spread to his bones. At that time he chose treatment. 74 yrs old, COPD, history of bleeding ulcers,clogged arteriers/surgeries, congestive heart failure, diabetes, high cholesterol....an array of health problems...He went through surgery to remove the mass in his lung, then radation & chemo next. My home is 2 & 1/2 hrs away but i came up to help as my aunt was incapable (disabled &highly depressed & MEAN). They are childless. During his treatments my adoptive parents & a friend were helpful getting him back & forth to appts and picking up meds. After a lil over 2 months living here I had to go home due to unexpected issues with my aunt. My uncle got extremely sick, hospital called me (not my adoptive parents) this past Dec. I've been up here since the day after Christmas, told my uncle if we could get him home I would (my aunt had been place in a nursing home at tha tpoint), against the wishes of my parents. The docs gave him 2 to 4mths, i guess we're at that mark....So much help was offered in the beginning, if I stayed here & needed anything just call. People came to visit that 1st month, picked up meds checked on us, now it's down to 1 good friend of his who will pick up meds. A hospice volunteer comes for a couple hrs on Mondays so i can go grocery shopping, The only social life i have is now with the hospice aid who comes 3x's a wk & his nurse once a wk. My uncle is scared to be alone. He has not accepted that the cancer is progressing & believes CBD oil will cure him (a friend of his sales the stuff & keeps him supplied). He tries not to be demanding but his frustration comes out. My adoptive parents & siblings have made helping him almost impossible. My children are grown and husband is a truck driver. Our only time together is on wkends, when he comes here there is NO privacy or alone time to be had. To date I've only been able to go home  once a month. When  I have gone my uncles sister who is a yr older than him stays,does the best she can but doesn't keep up with his meds. Taking care of him physically is not hard, emotionally is stressful sometimes but the disfunction in my family is making this almost imossible. His wife my aunt passed away March 1st....the chaplain said death can bring out the best & worst in people, all we got was the WORST!  My true support is so far away. There has been so much complaining about time, aches/pains and gas cost that I refuse to ask my adoptive parents for help unless it's an absolute emergency. I'm worried this is to much for me. I don't sleep, have lost weight, can't do any of the things that make life enjoyable for me....ALL that just sounds selfish to me. I know that if he goes into a nursing home he'll pass quickly and miserable. What does one do when everyone says they care but show on a daily basis they don't? I can't explain to my uncle why they don't show up or call. I'm exhausted just from the dysfunction...had that not been an issue taking care of him would've been easy

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Frequent Contributor

Re: caregiver burnout!

Evening,

 

I am so sorry for everything that you have been through, your situation sounds quite difficult and not receiving enough support from family cannot be easy either.  It sounds like your taking far too much on, your only human afterall. Perhaps it's time to seek outside assistance from government services??

 

You can contact the Cancer council to see what services are available for you. You can call on Ph: 13 11 20 and explain your circumstances. Or you could do more research on their website. Maybe you could seek an second opinion??? It never hurts to do so.

 

https://www.cancer.org.au/about-cancer/patient-support/

 

 

(Only if this apply to you).

Or maybe if your open to the suggestion, palliative care could supply the on-going support needed? Being an primary carer can be difficult at times. It is usually recommended to have more than one person share the support. But of course, this differs from case to case. 

 

 

(Just in case for emotional support - https://cancerqld.org.au/get-support/cancer-emotional-support/cancer-counselling-service/ ).

 

I hope something will assist. Please do remember to look after yourself as well.

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