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Mar 12, 2019 · Long-term caregiving: need a place to vent in Caregivers

@bradmm @georgette12

I understand both your concerns and frustrations. It is more the alteration on Quality of Life that impacts most of us.

Our story is a little different as we are not dealing with specific diseases as you both describe, which are far more serious IMHO, but an ongoing complication from major surgery which was ignored by nursing staff and surgeon until discharge initially 3 weeks post operatively in a private hospital. He was very sick at the time of discharge, but was adamant he be allowed to come home. Within 24 hrs he became so unwell i had to call the ambulance and had him readmitted to a public hospital where he was diagnosed as very seriously ill and required emergency surgery for a pelvic abscess and peritonitis following an undiagnosed paralytic ileus an electrolyte imbalance.
He had had 2 admissions to ICU, 1 post operatively and the second for severe dehydration, malnutrition and bactaeremia 8 days later, resulting in an acute kidney injury. He had a near death experience the day he was readmitted, and the suggestions by the intensivists were over ridden by the surgeon. He refused to agree to a CT scan, not once, but twice, which would have diagnosed what was painfully obvious.
His initial surgeon told our oldest daughter he had had a 'haematoma', wirh no mention of infection. He visited on a regular basis during his stay in the public hospital and sent me texts to say how much better he was! He had direct contact with the General Surgery Team however.

After a lengthy stay in hospital he was discharged at the end of last year. It was not until I noticed his most out of character reactions to things that had never bothered him previously and his severe anxiety when he I was not in his sight that I did my own research and found out about PICS and this group.

We are 5 months down the track with no guarantee things may improve. His abdomen remains distended and his bowels have never returned to normal, some days rendering him housebound. I now understand the term 'Anal Fixation'!!!!

Once discharged people generally felt he had recovered and even our 3 daughters who do live locally, who gave up so much of their time during his hospital stays, have withdrawn somewhat. He has been heavily involved with 2 NGO's (Non Government Organisations) State Boards for the past 12 years and has had to standown, as he is unable to fulfill his judiciary duties. It is as if he has had a leg amputated and I am expected to provide all support and any physical duties. It has been a nightmare. I resigned as a casual RN to support him for the suggested 6 – 7 week recovery period, not expecting it to be months with no real resolution in the short term. My real job now is caring for him.

On a positive note he has shown slow signs of progress and has been able to contribute to one of the NGO's from home, close to the toilet which has returned some value to his life and good for his mental health. Keeps him out of my hair a little, but he remains dependent in many aspects. He has last week regained his confidence to drive with me beside him for encouragement.

My heart goes out to you both and guess I need to vent too. Your stories are rather heart rendering and it can be no coincidence we have found our way here. Take care of yourselves which is not always easy I know. Hugs to you both from Australia. X

Feb 28, 2019 · I badly need your help!! Father refusing to drink water in Caregivers

As a nurse who has worked in Palliative Care I totally agree with you. It is a difficult conversation to have when you are discussing end of life issues and the implications for patient and families. Often patients have thought it through without discussing it with others for fear of hurting them. I recall watching a BBC Community Nursing TV Series on death and dying in the 1980's. In the first episode a saying was shared, It said, 'Despite the Advances in Medical Technology, Life is still Terminal'. We forget that in today's world, and as care has been basically institutionalised in our Western societies it has changed how we deal with death. Your referral to the hospice was a great decision. It is a shame they did not talk directly to your Mother In Law. As long as the outcome was the best for her, however is the most important thing. She was lucky to have had you as her advocate. I am pleased her passing was peaceful and was heard. Hugs and peace back at you. X

Jan 29, 2019 · Help for dealing with personality disorder in family member in Mental Health

@lisalucier
I have joined an uplifting and wonderful support group called Dad Surviving Divorce. It is a 50/50 gender group which has many links to other groups and individuals dealing with disordered people. It has been more helpful than many therapists, as it is difficult to find a good one who truly understands and actually 'gets it'.
There are singles, spouses and grandparents in the group dealing with the day to day struggles.
The biggest problems in dealing with 'these' people is around how we communicate with them. Duane Robert who started his group has personal experience having been married to a narcicisst for 20 years. He also shares 3 children with her. Having made many mistakes initially, as we all do, he and many members of his group share their advice and wisdom to prevent others from making the same mistakes. His youtube videos on No Contact and Hybrid No Contact are priceless, among others check out his playlist. I support a daughter to deal with her ex who has been, and continues to be vindictive and self centred. We now know he is unable to change and are learning to forgive him so we can heal.
Other people who have helped us understand are Sam Vaknin, a diagnosed narcicisst himself, and Abdul Saad of Vital Mind Psychology as he has a very good explanation of how empaths fall for narcicissts and fall under their spell. It is a tortous road. If it is possible to 'cut them off at the knees', there are better times ahead and the opportunity to become a better person yourself because of the encounter with them, as difficult as this sounds. Sending anyone involved strength and hugs. X

Jan 28, 2019 · Help for dealing with personality disorder in family member in Mental Health

@lisalucier
Yes sadly. Undiagnosed as you know few have the insight to see it is they with a problem. Possibly a narcicisst who blames and projects onto others so he never has to take responsibilty for his own actions. I have done a lot of research to best understand toxic relationships to best learn how to mitigate the chaos, trauma and damage they do to others.

Jan 27, 2019 · Help for dealing with personality disorder in family member in Mental Health

@dalzin
Your journey and that of your family must have been a difficult one. One of the most important things you can do is educate yourself on your sisters condition and learn to set boundaries so you do not let it effect you in a negative way. Where is her son now. He must be rather traumatised by his mothers unpredictable behaviours.There are many respurces on youtube on relationships with people with behaviour disorders. Stay strong and look after yourself. X

Jan 26, 2019 · Weary of Caregiving in Caregivers

@susan2018 Do hope there has been further improvement in your husband's kidney function. The waiting for the lab results is nail biting for you both. The fluid replacement in my husband's case resulted in oedema in both extremities but resolved the kidney damage. Each intervention comes with its own side effects it would seem. We need to stay strong and believe that all will improve. We have learnt to live a day at a time so we are not overwhelmed with what MAY happen tomorrow. As a friend says to me the world axis tilts a little giving us a new view. We need to simply enjoy the new view! Keep us posted.

Jan 26, 2019 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@andreab
I would be most grateful for their contact details. There is no support group in Townsville currently.
Many thanks.