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Reply by Aphasia Sufferer's daughter

07 Apr 2014, 11:30 PM

Is Stan's doctor asking about what Stan wants when he dies? Is Stan asking that a family member be there with him at the end? Is there a family member who will regret not being there and who wants to be there for him?
I would have expected Stan's doctor to talk with him about that.
I am glad the doctor has talked you through the process of his dying. I do hope that there will be oxygen, an antianxiety drug and hydro morphone to ease his struggling. Is he being visited by any kind of counsellor or minister?
I can see his buddy bringing beer there for the two of them to drink in the buddy's car.
Is anyone grateful for Stan's life at this piont? Is anyone telling him that?

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Reply by Aphasia Sufferer's daughter

07 Apr 2014, 11:41 PM

If Stan comes home after the Lodge will you have a nurse, rpn or psw with palliative experience? Can you ask them for that? My mom was dying for 20 hours. She was conscious most of the time. Stan might die of something other than a bleed...he could get pneumonia from aspirating when he throws up etc. ? We had a nurse with palliative experience and needed her to help us change my mom's diapers and clean her up at least five times...my mom needed to be comfortable. I could not do it alone. You want community care to identify palliative trained staff who can help during death.

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Reply by KathCull_admin

08 Apr 2014, 1:50 AM

Hi Melinda,
It's a long time since I posted to your thread Melinda. I have to tell you how amazed I am at your ability to 'look after everything' - Stan's physical and emotional needs, keep tabs on his buddy, be aware of his deteriorating health and the likelihood of bleeding and how to comfort him should that happen while you are there, looking after the rest of your family, your home, your work. Added to that your own physical and emotional tiredness, waiting for ‘something’ to happen, I would imagine some fear, lots of uncertainty, sadness and anticipating what Stan’s death will mean for you and life as you know it. I don’t know Stan but it seems like you having that discussion and making the decision about DNR(as you did Tracie) may have eased the load for him.

Take care Melinda (and you too Tracie and Cathie)

Katherine

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Reply by Melinda

08 Apr 2014, 10:46 AM

Thank you Katherine. Each day is more and more of a struggle to keep above board and its a helps to write my heart out to people who know.
And dear Cathie! We have all the stuff in place with the public health nurses for near the end. The Doctor is almost positive he will bleed out..but there is the possibility he will not. And if it goes that way, we are prepared. Please be rest assured.
One thing you did say that made me sit up; "Is anyone grateful for Stan's life?" He has a family that is very distant and do not visit him. He was considered the black sheep of the family and his brothers just gave up on him. He is an alcoholic and has left alot of destruction behind him. They all know he is dying so it is up to them to visit him and get peace...I cannot force them to do anything and its their problem.
I myself was just preparing to leave when he got sick...so I have alot of mixed feelings about him that I have to hide. How could I leave someone who is dying? He is all I have and would not be here today except for my help. I don't want any quilt when he dies and I will not have any. I will have regrets...and it will be about the drinking and all the years it robbed me of a really good man. I was with him before the drinking got so bad. I saw and loved the good person he was...not the alcoholic he is today.

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Reply by Aphasia Sufferer's daughter

08 Apr 2014, 12:54 PM

I do understand firsthand the harm Stan's alcoholism has done and the pain and estrangement of family when he adds to everyone's burden during his dying period. My dearest uncle was in a similar position. His boys tho managed to get him to a different city from his apartment in Ottawa (away from drug dealers, thieves and street people who were his " buddies" and yes to whom he gave his bank card passwords and more....and mkve him into an apt in Hamilton for many months and then by a stroke of luck into an amazing palliative care place in Hamilton, the Dr Bob Kemp palliative centre...free to those with no means who have stayed at home. My uncle was waited on and nursed by one of his three sons for over a year and a half. My cousins wife left him right after my uncle died...the strain killed their new marriage. My uncle never thanked him or told him he loved him. My aunt very very wisely left him several years before when he allowed street people into their lives. My uncle came out as a gay man with terrible street men....my aunt had struggled with his alcoholism for many many years but as he deteriorated he put her safety at serious ongoing risk. But here is what I wanted you to know; his other son said that the time visiting his dad in the Dr Bob Kemp palliative centre was the best time he had had with his dad in almost my cousin's whole life. My mother, my uncle's only remaining sister, had akzheimers but she and my dad travelled to visit him twice and it was a loving time. My uncle had been a stellar family man, successful senior bureaucrat in the federal government, the head of the unitarian church in Canada, a scout leader and so much more. He and my aunt loved all of us cousins. While he was self destroying and even while he was dying, at the end, no one of his work mates or his church friends or scouts etc came to visit. We came and supported him for his sake and for the sake of his kids and my aunt. I made his youngest brother come and pushed my elderly parents to go...i drove them in a rain storm...my mom who was so frail but loved him fiercely. So I deeply respect what you are doing and that is why I am addressing details like DNR and psw's AND Stan's spiritual health with you. My uncle responded to music therapy. My cousin who left work to care for his dad, who lost his second marriage under the strain, said it had been his profound privilege to care for his dad, even tho he had not been thanked or loved for it. Stan is not my uncle and your family is not ours. What ws have in common is that we have to wrestle with our circumstances and the harm the alcoholism caused and make decisions about what we can live with and what we can do and what it means for us...and we do that largely alone...and it is thankless. Having Stan in your home is impossible and scarey...so you might consider having the people at the hospital place him in a nursing home or palliative centre near the hospital when his treatments are done. It is okay to protect your home and yourself. It is a decision you have likely made ( to keep him home) and in certain circumstances keeping him home may keep the vulture buddies away from him and his bank account. I support your decisions regardless of what they are and even regardless of whether they are right. You are willing to slog it out minute by minute. I support what you are doing to keep everyone's life a little more connected and a little better. It is excruciatingly painful and very very lonely work. Hang in there. Maybe someone from the local AA or the hospital pastor could be encouraged to visit him while Stan is in hospital?

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Reply by Melinda

09 Apr 2014, 12:04 AM

Hi Tracie...the river opened in front of the house today...so I am sending you a few pounds so I can fit in the kayak in the summer!! Hope you enjoy them lol! Stan had a ct scan today and a mask made for his radiation treatments starting April 16th. I am going to spend the first few days with him at the Lodge..which will be okay. I plan on visiting my sister and maybe doing a bit of site seeing or shopping...just relaxing...knowing Stan is being taken care of. He is very up beat and cheerful today...so am I. I think its comforting to know the Doctors have not washed their hands of him completely... and who knows, the radiation may help for awhile!!
So we are enjoying our "up" day because tomorrow may be a "down" day. So glad to hear you are starting to take care of yourself and dealing with stuff. And I know grief can be very hard and stop the world for a long time...but eventually you come out of it and start living. I have been scanning my Mothers old photo albums lately and it has been hard. So many of the people in the pictures are not in my life anymore...so many losses. But we never stop loving them..we just have to start loving ourselves too. Melinda X0

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Reply by marstin

09 Apr 2014, 1:50 AM

Hi Melinda,

Well I'm glad that the river opened so that you can send me a few pounds and fit into your kayak It's a win win situation. Lol!

Yor plan sounds perfect for when Stan goes to the lodge. It will be great to be able to spend time with your sister and do something for yourself. It certainly is a rollercoaster ride when you're going through this and a break from it will do you some good. It's a tough road to go down without having some kind of reprieve.

Well, after talking about taking care of myself I received a call from my doctor's office and they wanted me to come in for the results of all of my tests. My oldest needed to see him too so we booked a double appointment. Usually we go in together but this time the receptionist said 'No, he wants to see you separately'. I let her go in first while I sat waiting in panic mode for my turn. It's been a long time since I felt so terrified. By the time I got to see him I was a basket case. Turns out that most of my tests were just fine, although I do have a bit of COPD. The issue he called me in for is that there appears to be a possible slight bulge on one of the arteries to my heart so they want to do an ultrasound on it. Silly as it sounds, I was relieved. I had thought myself into the worst possible scenario and it made me realize how alone I was and how much my daughters need me to take care of myself. Talk about a wake up call. I'm exhausted.

What a brave soul you are to be going through your Mom's old photo albums. One day I will take some photo's out and look at them but it will be a long while. I did come across an old album of my boyfriend that passed away 30 years ago and just peeked at the photo's. Then I got a phone call from his sister inviting me to their parents 60th anniversary. Part of me wants to go but the other part knows that it brings sad memories to them when we meet. They were eagerly awaiting a wedding back then and instead got a funeral. Still, they did come to my Mom's memorial (the Mom's worked together) so I almost feel like I should go. Hard decision to make.

I hope your 'up' day lasts for weeks. You deserve it.

Hugs,
Tracie

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Reply by Melinda

12 Apr 2014, 11:57 PM

Are you going to the anniversary party? I think they would not have invited you if they did not want you there!
Good luck with the ultra sound Tracie...does not sound too serious! I am going for a "scope" shortly because of my stomach and acid reflex going on. ( I swear it is just stress but better safe than sorry.) Medication has helped alot but its a good thing to rule out anything else...just like you!
I went shopping with a friend for the day and got home about three. We had fun and a nice lunch out together...but I came home and Stan is not doing well. He has not eaten for days and days and is just sitting there with his head in his hands. Looks like he has lost his best friend. I sat with him and just held his hand...and felt like crying. Feeling very blue right now so thought I would reach out. Its such a helpless feeling to see him like that..I want to wrap him up in my arms and tell him everything will be okay. He is refusing to talk so I just stay beside him...and wonder what is going on in his head. He is so weak...I don't see how on earth he is going to go through radiation next week! Perhaps after a few treatments he will decide to stop (or the Doctor will decide). Well better go back downstairs and see if Stan is okay. Melinda X0

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Reply by marstin

13 Apr 2014, 12:47 AM

Hi Melinda,

It's hard going to these kind of functions by myself but I guess that I will go. After all it's just a dinner then I can run away. I sometime's get a bit shy when I'm around people I don't know and Len was always my crutch in situations like that. I'm learning to at least make the effort but it's not easy.

It's good to hear that you had a fun day with your friend. Sometime's you have to step outside of the real world for a little while to help deal with what is going on in your life.

You said that Stan has not eaten for days. Do you mean he isn't even drinking the boost? Often times I remember seeing Len with his head in his hands. It is so tough to not be able to do anything to help them other than to be there. You want so badly to do something to make them feel less frightened yet there are no words that you can speak to bring any comfort. I would guess that his rose colored glasses are off and he is trying to struggle through the reality. This is so incredibly difficult to watch. Is he still able to get up and around at all? It's possible that they may choose to not do the radiation on him next week depending on how he is by the time that rolls around.

I wish that there was something I could do to help you as things progress. I can only be here for you as this transition happens and support you as best as I can. My thoughts are with you and I'm as close as your keyboard when you feel up to sharing.

Hugs,
Tracie

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Reply by Aphasia Sufferer's daughter

13 Apr 2014, 5:14 AM

Is Stan in pain when he doesn't eat? Headache or stomach pains? We increased her tylenol (in liquid form..and put it in juice or applesauce as she couldnt swallow the pills) wecould also give it ti her in a syringe.

Does he drink juice or juice with protein powder? I got protein powder from the pharmacy and mixed it into apple sauce or her juice to give her energy that would last longer than sugar...my mum wouldn' t drink boost...said it tasted like slimy liquid plastic...she did like the ensure pudding cups though. I tried to find food that smelled good to her to attract her to it and just to stimulate her senses.
It is a very frightening time whe your loved one isn' t eating. You need to be very careful to eat fresh fruits and vegetables and to get good protein and to stay hydrated...you are under a lot of stress and your body and brain need the nutrients necessary to mending.

Are you planning to have him use a feeding tube to get him enough nutrients to build him up so that he can take radiation therapy?

Hang in there, Cathy

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