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I live with and care for my 81 year old friend who has been physically ill for around 2 years. He had an emergency bowel obstruction resulting in a stoma bag, then suffered dehydration with kidney failure three times followed by a stoma reversal operation. Then he suffered a blocked catheter that caused urosepsis with septic shock. He refused treatment each time until doing so would have resulted in his death and it's been harrowing being unable to do anything when he so desperately needed treatment but wouldn't accept it. For example he suffered 3 months of severe sickness before he agreed to a Drs visit and she immediately diagnosed a bowel obstruction saying the vomit was faecal matter that was unable to go down, when a blood test, which thankfully he never refused, revealed he had dehydration with almost total kidney failure our GP rang telling me late Friday afternoon to call an ambulance but he refused to allow this saying there was no way he would get in it because he refused to go in hospital on the weekend. It took him an hour and a half to crawl up the stairs to bed and Saturday night he asked me to ring his son to lift him into bed as after an hour of trying he knew he was too weak to do so. Yet he still would not let us call the ambulance. By Sunday morning there was no output in his catheter bag and he then agreed! Each time I said I couldn't and wouldn't be put through it again but I've had no choice. Because I live here with him his family and I admit even I took it for granted I would care for him. But I had no idea things were going to get much much worse. He had been suffering memory problems for some time but then he started being aggressive and I realized his whole personality had changed, he became impossible to reason with and refused to shower, wash or change his clothes for weeks at a time (I'd been having problems with getting him to shower for some time but this then worsened) and his memory became so bad he forgets he's eaten dinner.
After researching dementia I realized its highly probable he has it. His family refuse to be involved with his care and I feel so alone and helpless. He refused his permission 4 times for a needs assessment before finally agreeing the 5th time and I also applied for a carers assessment. I have no idea when these will be but I'm terrified I'm pinning my hopes on receiving help for the tunnel light to be yet again extinguished. Before he became ill he was my carer, replacing my CPN. I am mentally disabled with many physical and mental problems of my own, I have adult Attention Deficit Disorder, had 4 psychotic breakdowns from 1981 to 2002 and both my physical and mental health have deteriorated in my endeavour to care for my friend and I cannot cope with his aggression that can only be described as abusive behaviour towards me. I am asthmatic but he refuses to stop smoking in the house, I smoked myself for 44 years but 3 months before my asthma was diagnosed I quit as I have a hiatus hernia and smoke aggravates the heartburn this causes but he refuses to believe his smoking also aggravates this. I have lived here for 12 years, 10 of which have been the happiest of my life. He offered me to move in with him as I wasn't coping living on my own. Moving out is not an answer and I can't really see there is an answer which makes me feel so scared. Any advice welcome.

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With your conditions, caring for a very ill, dementia patient sounds very ill advised and impossible, IMO. You have recognized this too, thus your post. It doesn't sound safe for you either. Does he have family who can provide him with protection and care right now?

I would consult with an attorney in your area to see what legal recourse you may have. Perhaps there was a contract that you could recover from, even if it was verbal. I would explore my legal rights and also explore what benefits you may be entitled to due to your disabilities. They may be funds, therapy, housing, transportation, etc. I would not delay in seeking safety and legal advice.
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I wouldn't count on him leaving the house to you, and unless you have actually seen it in writing I wouldn't even count on being able to continue to live in the house after he is gone. His sons may be sweethearts, but they will see this is as their inheritance and you are merely an unrelated friend that their father helped out in her time of need. Better to look for alternatives when your living arrangements are still somewhat stable, if you are afraid now imagine how much worse off you will be after being served an eviction notice after he is gone.
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I thought he had made it clear he did not want any more medical intervention and was prepared to die? Either if you are supportive of that decision, you are not personally obligated to be his caregiver as he deteriorates further. He needs to have his desires in writing and he needs to communicate them to his medical team and family. I think the mental and physical stress of caring for him to the end is beyond your abilities and could harm you, it is time for you to save yourself and find a way to bow out.
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No, you are NOT wrong to not have left your number. Let his sons assume his care. They may go back to the people who did the assessment...let them fend for themselves. Just relax and think about starting a new life for yourself, free from the obligation of trying to help someone who doesn't want your help.
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I respect his decision to die, if he's of sound mind. But my concern is that he's taking you down with him too. You've put all of your eggs in the basket of him caring for you when he can't even care for himself at this point.

It's obvious you don't live in the US, so I'm not sure what services are available for YOU, but you need to start looking into them. You need some emotional support and also some support in paying your bills and managing your money. Are there services where you live to help you with those things? You need to start looking into those things now and not wait for him to get worse. It sounds like he's going to pass away before long, if he refuses help, but then what happens to you? You need to start getting your plans in order and get support lined up for that time. I also wouldn't count on you being able to stay in that house. Plan for the worst and hope for the best. So line up some other living arrangements and if you don't have to use them, great.

Hugs to you - you're a wonderful friend who has been supporting a person who is very, very problematic. I hope you can find some good support for you!
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Kaydi, what exactly do you hope will happen with a diagnosis of dementia? I doubt that they can take him away to a nursing home or force him to accept help in the home if he refuses to cooperate. I hope for your sake that I am wrong but I expect that as long as you are there you will be expected to be responsible for him.
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Kaydi I'm so sorry you have to go through this and I'm sorry Don isn't getting the help he needs. It just shows the shortcomings in the systems around the world. You're still wise to get out with your cats to your daughter's home. Don has sons who can assume responsibility for him - it's not your job or your obligation. Please let us know how you're doing once you leave and go to your daughter's. Hugs to you - you've been through h$ll with Don!
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It sounds as if he has made the decission to die. When someone refuses help from the Dr and have a many serious problems as he does he may achieve his goal very soon. I believe in respecting that choice.
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Got an email today asking if tomorrow morning is ok for my carers assessment. So I'm finally gonna find out if I'm gonna get some help. Also had an appointment with our GP this morning but she was as useful as an astray on a motorbike in helping to get Don diagnosed with the dementia! She just kept on saying I need to get him to go there, saying to let her know in advance and she'd have all the tests ready including a blood test. But there is no way Don will go! And so much for writing a list of his symptoms - she didn't even read it! I'm praying the assessment will go better. Don is a mess, he's worn the same cream sweater day and night since 28th February and it's covered in food stains. Under it is his pajama top which he's had on the same length of time, no shower or wash so he smells real bad. Help HAS to be on its way as I can't live like this.
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Thought I'd do an update here as Don had his assessment last week, things deteriorated after my assessment as Don soaked pair after pair of trousers over the weekend as he kept forgetting to do up his catheter. As he still won't shower the smell was overpowering and in desperation I filled a bucket with water and shower gel and threw it over his legs to try to reduce the smell. He yelled at me that I wasn't getting away with that n he followed me into the kitchen where I saw him go to turn the tap on, I quickly moved away from the sink but he grabbed hold of me n refused to let me go. He smacked me across my head but still wouldn't let go of me n In trying to get him off me I rubbed some skin off his arm(this has happened once before when he had his hands round my throat and I grabbed his arms to get him off me). Unfortunately the water did very little to reduce the smell so I knew I had to do something more as it was intolerable so I emailed Jacqueline, the woman who assessed me telling her everything and asking if she could find out when Don's assessment would be. I then received a call from someone called Chris asking if he could come assess Don the following day.
It didn't go very well as he completely lost his temper, banging his hands on the arm of his chair and shouting that he doesn't need help, he can look after himself n he just wants to be left alone.
But Chris could see (and smell!) he can't look after himself. He is still wearing the filthy cream sweater I mentioned in an earlier post that's covered in food and port stains with the sleeves being black with filth. Chris didn't stay long, he said he's obviously not going to be able to reason with him today to which I replied you can't reason with him any day as he has dementia. He said he doesn't know what he can do n that he needed to speak to his manager but that he'd be back. I gave him my email address n he went saying he'll be in touch.
He then sent a test email to make sure the address was right and I replied telling him I'd spoken to Jacqueline about going to stay with my daughter and that my daughter had just told me she is on holiday from 16/25th April so her house will be empty. Going on the 15th will be easier for my cats as they're not used to children and I decided if nothing has been done by then I will definitely go.
At first Chris emailed back saying he was out of the office until the 11th and would email me when he gets back but he obviously changed his mind as he then sent another one saying he'd tried to arrange for the mental health team to visit Don but they are reluctant without Don's permission. So he said he and a colleague are coming on the 12th as the mental health team are questioning Don's mental capacity and his colleague, Helen is going to assess this. She won't be doing a full test as he said that takes more than one visit but he's hoping they will find a way forward from her assessment.
I'm certainly hoping so too but if they can't then my daughter will fetch me and my six cats on Friday. Both Jacqueline and Chris know he cannot look after himself, he admitted he wouldn't take his medication if I wasn't here and although he believes he'll be fine we all know he is deluded.
But if I don't make a stand then I've a feeling not much will change n after trying to care for him for almost 2 years I need this nightmare to end. I've had to quit trying to get him to shower as he became so aggressive and abusive, nothing I've tried has worked so I'm just having to grin n bear his horrific smell for a few more days. I've already packed everything except all the things that have to be done at the last minute, like cat litter trays, food n water bowls etc.
Oh yeah Chris also said in his email that he is going to contact one of Don's sons so he is aware of the situation. I'm pleased about this as I feel very bitter towards his family for refusing to become involved in Don's care. Don should be their responsibility, not mine but they have done nothing to help despite my pleas. I asked for a meeting with his 3 sons so we could discuss everything but they don't want to know!
I will post again after Don is assessed tomorrow.
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