How do I make end of life decisions with dad without him thinking I just want rid of him?

[Rexs_daughter]

Hi everyone! I've only just found this site but I'm so glad I have! Dad, aged 77, has had PSP for approximately 4 or 5 years. I care for dad in his own home along with my 2 brothers. Mum was always the stronger one of my parents but she unfortunately passed away last year after being diagnosed with bowel cancer. Dad has deteriorated greatly over the last 12months since mum died. We have carers who come in 4 times a day. My brother has moved in with him to look after him and I try to spend every afternoon and evening with him. I've given up my job to allow me to do this. My other brother looks after dad every sunday. We are all finding things so hard to deal with. Mum and dad never spoke to each other about what each one wanted re their funeral etc, so we are at a loss as to how to raise the subject with dad. He is now at the stage where he is unable to walk independently, needs assistance when going to the toilet, he chokes regularly when eating/drinking and his voice is the quietest of whispers. He is still mentally aware of everything most of the time although I don't think he realises what stresses he is creating for us. Please don't misunderstand me - we all love dad greatly, but feel we need to get this across to him. He has no quality of life left (he was always so active previously) and we feel there is no humanity involved in, say, treating him if he gets chest infections etc. He was in hospital last March with pneumonia.

How can we talk to dad about how his health is affecting us - I have taken antidepressants for several years and this is having a detrimental effect on my health - without dad feeling he is unwanted?

[easterncedar]

I don't know what the law is like where you are, but surely there is something like this available. Every doctor's office, physical therapist and hospital here has a 14-page "advanced care directive" form that they recommend everyone fill out. It's straightforward, mostly information; the actual bits that you fill out are 4 or 5 of the pages, and include naming an agent to make decisions for you, or letting a judge do it, whether you want to be artificially fed or resuscitated, whether you want to donate organs, how you want to be buried and so on. It's very easy, really. The idea that outsiders will be involved if you don't make your wishes known is a good incentive to do it. Even there isn't a standard form for your area, you could use something like ours as a basis for the conversation, perhaps. maine.gov/dhhs/oads/aging/r...

I hope this helps. I do understand how hard a place you are in. Your father is lucky to have you. Hang on! Easterncedar

[flicka]

I am so sorry about the situation facing you ALL. I would please beg you all to seek more help. There by helping you all to see the wood for the trees. One can not make the right or rational decisions when every one is at full stretch physically and emotionally. I shall be thinking of your Dad and all of you and wish you a more gentle way of life. Flicka x

[snapper in reply to flicka]

Hi it would help us all to give advice if we knew which country you were in. All states have different rules and systems on this.

[NannaB in reply to flicka]

My husband wouldn't talk about the future so I spoke to our local hospice where he goes to the day centre once a week. I told them he was reluctant to tell me what he wanted so they spoke to him, first on his own and then together. They then gave us a booklet to complete and asked to see it the following week so they could make a note of what he wanted for the future. The hospice staff are so used to talking about these things that it all seemed so natural and my husband opened up. He said he wanted a PEG when he could no longer eat, and didn't want to be resuscitated if his heart stopped etc. Could you ask one of the professionals involved with your dad to help or pick up the booklet from a local hospice if you have one. I've never seen the booklets at the GP surgery but haven't looked but I am sure the GP would be able to help. With my own dad, who died last year a month from his 97th birthday, a year before his death I went to a funeral. When I was talking to him about it I said, " Right dad, if I don't die first, one day I will probably be at yours and haven't a clue what you want it to be like, let's plan it now." He laughed and made a joke but he told me the hymns he wanted and then I broached the subject of end of life care. We had a very useful discussion and laughed a lot as he had a great sense of humour and saw fun in every situation.

For peace of mind, I do hope you can get your dad to face up to the future.

Best wishes

Nanna B

[Rexs_daughter in reply to NannaB]

Thank you so much Nanna B for your reply. Dad still has his sense of humour, so I can imagine us using this approach. Reading through everyone's posts on here gives me a great sense of comfort and makes me realise we are not on our own with this awful condition. Thanks again.

[mthteach]

My experience is that you have to be up front with him. Ask him is he is ready to make plans for after he passes. My father-in-law wanted everything in place. So, his answer was, "yes, lets pay a visit to the funeral home." My mom has set everything up like him, but when you ask to talk about it, she said not now. You have to approach him about it.

My husband has PSP. About a month ago we went and did our will. Afterwards we went to the funeral home and made a wish list of the casket we wanted etc.... We never bought anything. Just told them our wish list. They said they would keep it on file. I do not know for how long, but at least now I know what he wants. of course I made my wish list out with his help. Good luck

[jimandsharynp]

I would not recommend you talk to your dad about how he is affecting your lives. It will only upset him and won't achieve any purpose for either you or him. Just love him, care for him, and do your best for him. He raised you, now it's your turn to return the love to him. Jimbo

[daughter_Julie]

This could have been us. Your dad has no idea of his impact because the disease has taken that ability to understand away. It certainly took my dad's ability to empathise away. As someone has pointed out, the buck doesn't actually have to stop with you. There are other people who can do this for you. I totally understand that pressure of feeling you need to make those plans. Ultimately, my dad never wanted to die and always wanted to live no matter how crap things had become. I can kind of understand this as what is the alternative? Nothing,

My heart completely breaks for you. We suffered from the elephant in the room all the way through and it made everything so bloody hard. The disease brings nothing but heartache and pain. You have all my best wishes. It sounds heartless but I hope the end will come for him swiftly so you can all be free.

Also, my dad qualified for chc funding, which was 24/ 7 care for a good couple of years. If you can do this,your feelings of exhaustion and worry will be helped.