Decisions


#1
Well Monday started off alright go for usual swim and the rest of the day quite quiet just walks with the dogs. monday night up all night with a urine infection not a minutes sleep just plenty of tea and walks back and forth to the loo.
Tuesday a trip to the doctors for the usual pills can't wait to get back to bed for a sleep, which luckily I had for two and a half hours bliss, didn't feel like eating much which I am sure the old body was glad of as I am overweight then a good night whoopee.
Wednesday still feeling like a wet rag so taking it quietly then the phone starts and after a lot of calls a welcome cuppa, ops no time for that another call from our son who was having trouble with the car on the motorway so can I pick him up from the garage of course says I when a knock on the door and a very dear friend called to see if I was alright,and blow me another phone call from the care home to say my husband has gone into hospital with a suspected heart attack, this is an hour away from me.So action plan sort out some clothes,Pills and food to take and what about the dogs two labs so water and food for them do that and get another call from the consultant as my husband has signed a dnr form and included that he does not want a lot of medical intervention, the day has come for that decision but because of his speech they weren't sure or comfortable to do anything until they had spoken to me, well after speaking to the doc who was very nice and as my husband was able to talk although not clearly enough, then he should have the treatment and they went ahead.
Well the car was all packed got son home and told him the news sorted the dogs out and ready to go then another call from the doc who said all went well and hubby was resting and quite sleepy, now comes the decision do we leave him to rest or do we go and we upset the apple cart as he may get upset and angry which will cause the ward distress as well as himself, another call from his carer to say he is fine and not to worry about going as it was now around 7-45pm and hubby was fine so we decided to stay as I was like a wet rag and no use to anybody really, so unpack everything including dogs and get to bed.
Up the next morning and off to visit hubby and at last we can all relax with lots of tea and biscuits althouth not too many for me.
Latest he is doing well and he may be breathing better as they found a blocked artery which had been like it for some time, he had choked on a peice of beef two weeks before and they think that may have triggered problems off.
Oh! well lets hope for a quieter day tomorrow.
best wishes
vivian

#2
Dear Vivian,

What a week indeed. I am so very pleased that your husband is doing a little better.

I am impressed that the hospital Drs contacted you even though your husband had signed the dnr form & had indicated that he wanted no further medical intervention.

One of the hardest things I have ever been askd to do was sign a dnr for my mother. I asked if I could have the time to talk to my elder sister about it ( I had POA). She advised me to sign, but told me that if I did such for her she would come back to haunt me!. I do not mean to be flippant, it is a huge decision. In the event, in my mother's case it was not an issue.

All I can do is wish you, your husband & family my very best wishes and prayers

AB

#3
Dear Anneberdette,


Many thanks, yes although I tried to be a bit casual about it it was pretty distressing at the time, we have had a bad couple of years lately as my husband had just gone into care when our son was diagnosed with liver and pancreatic cancer and a portal vein thrombsis which of course we couldn't tell my husband about so our son has had a fairly stressful time of it, happily they eventually told him that there was no cancer but he is left with the thrombsis which they can't get rid of and which may cause problems for him in the future. he is single although lives in his own house not far from me so at least we can support each other although I wish men would talk more about how they feel. We are a close small family and have got used to going from one disaster to another but I have lovely friends,but it would be lovely to see our son settled with a nice young lady so I keep praying.
Many thanks for your prayers and comments
god bless
vivian

#4
Hi Vivian,

I feel for you, I'm the person who wrote the post, the tribute to my mum. So I understand.

It's so hard to decide if you do the dnr or not. My mum's parkinsons was getting worse, every week we would see a difference.

She had said she hated being in the body, years before when we lost my grandad after a long illness, she had said to us that if she developed any illness that was getting to be to much then we were to let her go. We had to make the choice of dnr, as her heart had stopped they had managed to get her back, but the consultant was concerned over brain damage and said if she did recover her quality of life would be virtually nil. So it was time. She passed on peacefully 2 days later.

Even with your loved ones permission it's the hardest decision to make, as we naturally want to keep our loved one with us.

I'm so glad your hubby is doing better, all I can say to you Vivian is you will Know when the time is right.

Also you must look after yourself, you sound exhausted. Don't forget about yourself.

I hope all goes well
Keep us posted.

xxx

#5
Hello Fletcher,
Many thanks for your reply,
I have got used to life with pd always throwing something new at you but it was because of my husbands behaviour and complete exhaustion on my part that he had to go into a nursing home, he still has one to one care from 7am to 12pm in the home but I am sorry to say that some of the problems are caused by people working in these homes who have no idea of proper care not even the basic's.
He has been to hospital again this morning as he had a very bad nose bleed due to the meds given him after the heart problems.
As you see from the newspapers this problems of proper care is never ending and I only wish something could be done to make all carer's trained and paid better, but no one seems to be brave enough to tackle it.
I keep doing the euro lotto and hope one day to win and open a really good home for pwp so far I have had several wins of less than £20 so I have a long way to go. We have signed the DNR forms because we think that sometimes there is too much intervention by the medical teams and we want to peacefully and not full of tubes etc.
My mum died 5years ago and we stayed by her side for almost two weeks before she died very peacefully which we were grateful for.
thank you once again
vivian

#6
Hi all you in this thread, poor Viv my heart goes out to you its just SO hard when you are tired and ill yourself and you have to start jumping around, but well done.

What i wanted to share is that always with the people close to me who have died these being my Dad, my Mum, my sister and a very dear friend I was always lucky enough to be close by the bed and refused last minute dashing around and heroics by the docs, in our family we always say no heroics because a peaceful death is so much more valuable. Some of the things the docs try to attempt if you dont take responsibility in this way , like when my Mum being 93 years old and in last stages of heart and kidney failure in a nursing home, they contemplated rushing her off to the hospital for intervention, we said firmly no heroics and she didnt want to be messed with anymore and so she staying in the nursing home with us and with a fantastic carer who held her hand all night and 2 days later she died peacefully in her sleep, this is natural .

My sister died of cancer and my friend also and the cancer hospitals and hospices understand this peaceful death thing with no heroics completely in my experience. lots love to you all Sunray xxxxxxxxxxxxxxxxxxxxx

#7
Hi Sunray and everyone,

So glad that you agree with less intervention and a peaceful end, you hear of ninety year olds being given crazy treatments and I have seen several people on peg feeds and other tubes just laying there year after year sorry thats not life and certainly not fair to the person who generally has no idea of where they are or anyone around.
A bit of good news the care home company has been take over so I am hoping we will see some improvements, I have received the information on their other care homes so I will now write and thank them making few tactful comments in the hope that they will see the benefits. There is a huge walled garden that the residents can't use because of badgers and I have been in touch with the badger trust and there is certainly a way around the problem thank goodness, it is crazy that 31 residents can't use a beautiful garden (once we have got it sorted) because of a couple of badgers. My idea is to have bird boxes, bat boxes and flowers to attract butterflies with lovely canopies for the people who can't get out of their wheelchairs and patio sets. As well as raised beds for the residents to use as they wish, of course there would be plenty of tea coffee and juices. I will let you know if I have any luck.
I just went all the way an hour by car to see hubby and they were off to the zoo as they had a power cut and problems, oh! well rod stewart sing me all the way home.
best wishes to you all have a lovely day
vivian

#8
Oh Vivian ...You are so brave , you really are .. I do understand everything you say . We all do a lot of pretending don't we !!!

It's one thing on tp of the other and that's on top of the health of you and your son ..

#9
Hello Jonnie,

Many thank for your comments, but i am not brave really you just have to keep going don't you, Its just so difficult when you know that your husband isn't getting the right care and there is nowhere else to go. I am worried about our son as he has just admitted to me that he is on antidepressants, when I think of all the people over the years I have been able to help and I can't help my own son, men are so difficult to get to talk about their problems having said that we have all had an awful lot to contend with the last few years. I just have to be ready when he wants to talk as I am all he has got apart he now has my retired dog which is great, you naver stop worrying when you are a mum.
I hope you have had a good few days
best wishes
vivian

#10
HI EVERYONE,
I have just bumped into a man I won't call him a gentleman, who after treating me really badly for no reason which I won't go into here asked me how I was and a how my husband was, then said of course you haven't had any life really as you have given it all to helping people with parkinson's, unfortunately I wasn't quick enough otherwise I would have said that I have had a very full and rewarding one meeting all these lovely people who are both very talented,sincere,brave and with a wicked sense of humour whom it has always been a great honour and privilege to be involved with. I have made some really wonderful friends who I still see even though I have retired, to me time spent with other people is the most precious thing you can give and I have lots of very happy memories which still bring a smile to my face.As you all find on the forum everyone is so helpful and caring to each other it is wonderful to see in this busy world, keep it up.
best wishes
vivian

#11
Hi Vivian,

It would be interesting to know what has been so wonderful about this man's life that he presumes to judge the life of others. Obviously in his mind PWP's don't count as far as friendships are concerned. I'm getting a very clear picture of the mindset of this person but can't really put it into words except to say that you will no doubt rise above his shallow comments.

Best wishes

#12
Dear Eileen Patricia,

I agree with you and I have no time for people that are insincere, I don't understand their mindset at all, people are the most important thing there is and I didn't have to say much but you hit the nail on the head. Thankfully I was brought up to care for our neighbours where ever in life and that is far more important than trying to be the Mr Big.
best wishes
vivian

#13
PS.

As my Mum would say 'not of our sort vivian' thank goodness.