How to manage/ watch for deterioration

Thanks for your reply.  He refuses help and/or mobility aids … incredibly stubborn. I have told him to wake me up if he needs to go to toilet, let me help him get there. If he doesn‘t, I‘m going to awakened anyway and have to struggle to get him up.  Your idea of bed is possible, not sure if he will accept it.  I had one in our dining room after I was released from hospital with lots of fractured bones (bilateral hip, bilateral clavicle, and 11 ribs 4 years ago).  I watch him struggle to try to get himself upright in bed.  When last spoke with GP doctor (who has worked at hospice also(, he did not believe Dave was ready for hospice support yet.  He can manage most of self-care activities.  We got out again today … rather nice day, sitting in bird hides looking at birds, not too much walking and what little he did, he broke it up with rests in between.  No vomiting today … whew.  How about you?  How has your day been?  

DaisyD22, No problem joining the conversation.  I am sorry you are struggling similarly.  You are welcome to join  in.  If you need to share any thoughts or experiences, or just vent, go ahead.  I‘m sure others here likewise welcome you.  These are challenging times but I don‘t want to wish them away … I don‘t want to be without my husband.  I hope you are managing ok and that you have support.

My husband was in a similar place for a long time and has only just accepted that he needs help. I’m so pleased you managed to get out, that will hopefully make you both feel much better. Could you speak to the GP again? The hospice shouldn’t just be end of life care but help people with long term illnesses too.

Our day was Ok, thank you. Andy has now been put on the ‘virtual ward’ at the hospice so is getting more care at home whilst he’s on that. We had a carer, district nurse and hospice nurse all come out yesterday which was helpful. It’s easier when you have people around in the know so you don’t feel so much pressure on yourself. Today we will have the carer and lymphoedema nurse visiting and then a call with the hospice and then GP this afternoon - it never stops! X

Good morning … still just morning, soon afternoon.  Husband is now up, showered self. I helped him dress and got a tea and toast.  He doesn‘t want to eat much.  He is totally knackered.  He has no energy and shortness of breath an issue.  I thought we might get out for outing today, but I question how much or what.  Thanks for t he suggestions about hospice.  I will try to get in touch with GP and with Hospice to see what options are available.  There are lots of challenges ahead … especially since I got date for hip replacement surgery a few days ago.  You are right, having some outside help could be helpful for both husband and me.  How are you managing?  Your daughter must have questions … but then as you pointed out, 4 year olds are very energetic.  Love and hugs to you!  

Additionally, I‘ve never heard of a virtual ward.  Interesting prospect.

I would definitely ask, you can thn dial up and down the type of help you need. My hubby also has little appetite, he manages a couple of mouthfuls here and there, but not much. That's great that he was able to shower himself, that must make a big difference to his independence (and just give you 5 mins back too).

We had to have a chat with our daughter over the weekend and tell her that Daddy will die, it was heartbreaking. She has been absorbing it over the last few days and does have lots of questions so we have been trying to answer these as they have come up. Straight back to you also x

When people are dying, the digestive system is one of the first to shut down.  Thus lack of appetite, not eating/drinking are symptomatic (dreary as it may seen, you can google search symptoms/signs of death, what you might expect).  Dave ate a little more midday, fortunately kept it down; however, it seemed it totally wiped him out.  He has been snoozing on sofa.  He has hearing aids in still but is unable to understand what I say (a bit of a frustration for me, probably for him too).  I did have question … have you noted that your husband speaks in his sleep/dozing states?  Dave seems to do that a lot more often, also it was worse when he had fever.  Much of those uttering are impossible to understand or fragment of them seem way off.  When my mom was dying, she had some interesting comments, sometimes incomprehensible, other times remarkably clear, other times bizarre (that was nearly 15 years ago and I stayed with her in hospice for the last 3 or 4 days of her life, sleeping in a chair by her bedside).

I have been increasingly emotion, breaking into tears more often.  It is so hard to watch him get weaker.  Alas, it is the same thing that you experience, as well as numerous others, such as the two people that joined in.  Lots of love and strength to you.

He doesn't speak whilst asleep as such but can be very confused upon waking and can take some time to come to himself again. I have been similar today and I struggled to stand him up to go to the toilet earlier and was worried I wouldnt be able to help him if he fell. Managed to get him back on his chair but he was totally wiped out after just a few steps with the walker. It was so sad to see how much it took out of him. Thank you and to you also x

As always, I enjoy receiving your message.  I know who discouraging and stressful these times can be for you, to see your husband stripped of good health and struggling, if even able, to do basic things.  I have similar worries about falls.  My husband is quite a bit larger than I am, plus I don‘t want to further hurt him in trying to move or reposition him.  Husband is still interesting in getting out, though  in very leisurely fashion … usually midday before we go anywhere.  Fortunately we don‘t usually have any early obligations.  What we did today was uncomfortable for me in way yet it was also very helpful and a great relief.  We met with funeral director today to work out plan.  I hate the thought of not having my husband, but at least we have worked out the basics, very simple, natural, no fuss.  Odd as it may sound, it took a weight off of me, something less to worry about in that eventuality..  The woman we spoke with there also recommended a nearby spot where we could drive and park and watch birds without leaving our car.  So we spent a couple of hours there having tea (prepared in a flask) and a little food (not much for him).  Of course the long day wiped him out.  He snoozed on the sofa for a while, then went to bed.  Again lots of warm wishes … keep going.  Perhaps you find enjoyable times reading with your daughter.

It is so hard. His breathing has dipped today and he is quite rattly, his sats were down to 76 this morning so he has been on the oxygen today. He is feeling very weak and the hospice nurse is coming out this morning. Our 'just in case' drugs arrived yesterday so we have all the subcutaneous meds ready to go should we need it. The last 24 hours seem to have gotten even worse which doesnt fill me with much hope. I think today may be a difficult day. My daughter went for a sleepover last night at grandparents, so it was nice to just have one person to worry about throughout the night. I always miss her terribly though, so looking forward to seeing her again. I hope you manage a good day today x