Still not home yet they keep saying yes today then they change their minds don't know if I am coming or going but they need to get things right. Been for my check up at the doctor's my BP sky high he's put me on yet another BP tablet thats 4 now and a statin at night here is me thinking I am as fit as a fiddle and it seems not but he did say I am under a lot of stress aren't we all. I also have my brother diagnosed with cancer hes not got long to live it's in every organ now I cannot get much to see him as I am at the hospital every day thank goodness for the phone at least we can talk. Life is a pain sometimes but we have to carry on and make the most of what we have I will keep you posted.
Things just get better
- Thread starter Elaine68
- Start date
OH is home managed to get him home Thursday night just taking my time adjusting back to caring for him needs much more care not so much the memory problem but very frail which you can expect at 81work cut out now. At least not tracking to hospital every day how long for I do not know but I am doing my best to keep him at home. Just monitoring his weight and fluid intake any change get the nurse so it's all me again doing most of the caring but my eldest son is doing some dad sitting so I can still go out for breaks which will help greatly and give him a taste of what life is all about bless him he's in for a shock.
Well things did not go to plan on getting my OH home we have been going to hospital every other day as his warfarin is up and down like a yoyo just finished with that last monday now he's taken fluid back on so he's on 10mg of water tablets till he loose's it if this does not go down we will be at the hospital everyday for 4hrs a time on IV furosemide thats just one of the problems his memory is so bad now. This may make you laugh it did me at the time my eldest son came and his dad said do you want a drink I will make you one so in comes dad with coffee black and my son as milk so he says dad I have milk! dad says do you, son says it's ok dad I will drink it on taking a drink he turns to me and says it's stone cold mum my O h had only made him a coffee with cold water out the tap bless him. Then yesterday I found a cup in the dogs biscuits and my box of biscuits under the sink and the dogs biscuits on the pantry shelf and then he says to me shall I cook dinner I think not. So things are getting worse but what can you do I think I get quiet a lot of laughter with the hard work looking after him and sometimes it makes him laugh but at the end of the day he says to me thank you for looking after me and I love you and that is all that matters he still loves me.
Hi not been able to chat for a while really full on here got heart failure nurses , district nurses and surgery nurses coming in plus this fluid build up is not going away we are at hospital every day next week so OH can go on IV Fusamide he may also need a blood transfusion or IV Iron guess it's still better than him being in hospital all the time but still going to be worn out. Went to the memory clinic last Thursday now it seems the medication for alzheimers is affecting his heart and kidneys so a meeting with heart doctors and memory doctors to see what can be done as he's already on 35 tablets a day for his other problems just going round in a circle at the moment. Not getting out much apart from hospital but at least I see other people there.
That sounds very stressful Elaine.
I remember how hard it was to get a balance between all his problems.
I remember how hard it was to get a balance between all his problems.
I've just found your thread Elaine. You and your husband have been through so much. You must be absolutely exhausted both emotionally and physically. How is your foot? Are you able to talk to people apart from nurses etc? I hope you are able to have some "Elaine time",though it sounds like that would be very difficult at the moment.
Sending you hugs...
Sending you hugs...
Hey thank you hugs are always welcome my foot is much better thanks. Not much me time sorryto say but to day I have been moving bedroom furniture around so I can take his reclining chair up in the bedroom for when he as bad nights at least we are in the same room.
I have bought him another one lift and recline for the room I just want him to be happy. I don't get to see friends as much or get to church with things being as they are they ring me and we chat for an hour which is great I don't have that much to talk about really as they talk about holidays and going out for meals I just talk about caring as always a bit boring I guess they say you are doing a really good job looking after him we don't know how you do it well you just do. The good news is my BP as come down which surprised me with the stress.
Just done 3 days at hospital each 4 hour session's so OH can get rid of this fluid we saw the main cardiology consultant who informed us that one of his values was not working right but to do another opporation it means stopping the heart and then restart it and he is worried it might not start again. So we now need to go to hospital every day for 2 to 3 weeks to see if this fluid will budge it's self on a fuseamide iv. Cannot get much done at home at the moment and I keep cancelling appointments that have been made for the 4th time so even though I am only sat there with him I am shattered when I get back home silly really but I have to see to him there as well like taking to the toilet the nurses just do not have the time it will be our second home for a while and not looking forward to it.
Oh my. Huge hug Elaine to help you through these exhausting times.
Is there anybody who can take over a "shift" for you? With a taxi to the hospital? Just so that you can maybe just have a long soak in the bath or...do nothing, for an hour or two?
I understand that you want to be there for everything but you do need to recharge your own batteries too x
Is there anybody who can take over a "shift" for you? With a taxi to the hospital? Just so that you can maybe just have a long soak in the bath or...do nothing, for an hour or two?
I understand that you want to be there for everything but you do need to recharge your own batteries too x
Hi HillyBilly I have had my internet down so not been able to get on sorry met with consultant Wednesday and the situation is not good at the moment we now need to go every day for the next 2 to 3 weeks so he can go on iv for 4hrs, it was decided his meducation was going to be changed but they are really juggling with his heart and kidneys he must get rid of 15lits of fluid easy said than done.
It is confirmed he's got Alzheimers and early start of Parkinsons but now the heart consultant and his doctor at the memory clinic have now said they can not treat these conditions with any form of medication because of his heart and kidneys being in such a critical condition and they upset his medication for his heart and kidneys so here we are going round in a circle.
At the end of the day we have to weigh everything up do we keep him reasonable well and a live or do we put his memory first and put up with him gone at the end of it all really big decision but I put his health first I can cope with the memory loss.
No afraid it's just me doing trips with him to hospital not much family left on both sides and son's work they do what they can but they need to work for money as they have responsibilities and houses to pay for both their partners work as well so how can you ask friends to sit there for 4hrs our friends are all mostly over 70 I could not do that to them and they are not in good health what a crowd we are lol.
I will be ok I just leave everything else around the house till the weekends I space thing out glad winter is here as the garden can look after it's self for a while.
Life is hard sometimes but I just get on with it cannot remember last time I had a glass of wine I have some just never get round to opening it worn out at the end of the day and just drop in bed it would be a waste of good wine. Thanks for hugs guess thats all I need for now.
Up date on our travels to hospital over the last weekend my OH lost 2k in fluid on tablets we went to hospital Monday and he came top of the class as being the only one to loose most fluid I thought yes it's working. We have been today and he's put weight on and thats being on IV for 4hrs we were the last to leave but the heart failure nurse came to us and said the kidneys are not happy with all this pushing with IV and it's now time to go home and talk things over at what we now want and we are talking weeks and months only. The nursing staff have noticed we are both worn out when we get to hospital at 10.15am and they said I am starting to look ill and it cannot go on I said I cannot keep this up coming everyday I can manage 3 days but not 5 we are in bed at 9pm my body is giving up on me. So when we see the doctor tomorrow the nurse is going to say we are taking the rest of the week off and we can have a long weekend and even take next monday off as well just go Tuesday for blood test she now thinks he will be better back on tablets and forget the IV also bring the community nurses in to save us traveling to hospital everytime and this will give me the break I need. I just find it hard running the house and everything that goes with it plus this rushing round in a morning to be ready for the taxi and sitting there for 4hrs when I get in I need to do most of the jobs I have not got done, cook tea and time I sit down it's 7pm I am ready for bed I know I cannot keep this up it's a long day from 7am.
I start this up date with bad news I'm afraid on seeing the doctor at hospital we have now been
told nothing is working any more and it's only a matter of weeks not months any more. He asked what we wanted to do did he want to die at home or at hospital he said home with me this is going to be the hardest job I will have to do I need to keep it all together and be strong for us two and our sons lots of planning to do now. The palliative nurses are coming in at some point but we are back at hospital next Thursday for blood tests not sure why they want to keep pushing this seeing as we have been told all this nobody can stop whats coming.
I end this note with a lump in my throat and a pain so deep in my heart I guess it's time to crack that bottle open now I think I may need more than one or two.
told nothing is working any more and it's only a matter of weeks not months any more. He asked what we wanted to do did he want to die at home or at hospital he said home with me this is going to be the hardest job I will have to do I need to keep it all together and be strong for us two and our sons lots of planning to do now. The palliative nurses are coming in at some point but we are back at hospital next Thursday for blood tests not sure why they want to keep pushing this seeing as we have been told all this nobody can stop whats coming.
I end this note with a lump in my throat and a pain so deep in my heart I guess it's time to crack that bottle open now I think I may need more than one or two.
Thanks Cat27 I dont know what to say or do any more I feel so lost at the moment just shock taking over.
Oh Elaine68 I feel so sad to hear all this. Not been on here much lately and reading your posts makes me feel almost selfish. I cannot imagine how you have coped so long with all that has been going on. You have done amazingly well to have somehow kept going. I wish you peace with your poor man and that you can have some comfort in that fact that nobody could have done more than you to help him. I send my love.xxx
Elaine I am so sorry. I can't imagine what you are going through *hugs*
(If they are adamant about taking these bloods, surely they can take them at home? The community nurses are coming around) .
Your strength is amazing but you must be so tired. *another hug*. I hope these support services will help you both...
(If they are adamant about taking these bloods, surely they can take them at home? The community nurses are coming around) .
Your strength is amazing but you must be so tired. *another hug*. I hope these support services will help you both...
I am so sorry to hear this, why their insisting on taking bloods is beyond me when they are now saying its palliative care. I do hope he gets safely back home and you have at least a peaceful time together before the end. Big hugs x
Many thanks but he is home with me and for the last two days we have just rested and listened to cds had a sleep here and there to charge the batteries. The funny thing about this is for months they have been trying to get his INR right it's been up and down now it's bang on what it should be 3.2 at least something is right. I t hink all these blood test are to see if his kidneys are going to hold out with the amount of water tablets being taken but there again if the heart gives up what does it matter about the kidneys just going round in a circle. I am feeling much better health wise but still finding it hard to get my head round everything that as been said it will take time just hope I have long enough. Thank you for the hugs.
