Husband End of life, nursing home

Hi Sweep

I'm sorry to read how hard things are for you at the moment but I hope you'll find the online community an informative and supportive place.

As you've said that you want to talk to others in a similar situation, I hope you don't mind me suggesting that you also join the supporting someone with incurable cancer group where you can discuss your emotions as well as practical issues about palliative care.

To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. 

It would be great if you could pop something about your husband's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help

x

Thankyou I think I've sorted my profile

Hi Sweep,

I noticed it's been a few days since you've posted here.  I hope maybe you've joined another group on here and are being supported by us.

If not then I really hope that things evened out for you and hope your husband accepted some pain relief and oxygen to ease his journey.  It must be so very hard to see someone you care about suffer. I guess anger could be one normal emotion you could be feeling right now along with pain,anguish and sadness.    Sending you hugs and love xx

Thankyou for asking how I am, I've had a better couple of days with my emotions, Still hurts not any easier to watch but my husband is having pain relief and his oxygen at times, not struggling so much as he was. My other issue is feel hopeless that I can't do anything to help other than visit, feel guilty he is actually in care home and I couldn't look after him at home. But I also understand the care he needs I couldn't give him. 

Sweep, I'm so pleased your husband is more comfortable. He must be going through so many emotions too like you are.  There are no easy ways to get through this period that I can suggest except - you feeling bad for not coping at home is so totally normal hon, even when it's the truth. It can make him angry with you too, again even if that's unfair and probably is deflected anger towards his illness returning and shortening his life.

All the emotions are running around right now I guess between both of you.  When you visit  can you or do you both talk about what's happening?  Or is it awkward silences?  It can get hard to know what to say at these times.  Have you talked with him about how you feel ?  Can you take a book to read/knitting/ old family photos/ sewing/radio in with you and sit in a comfy chair in his room and be busy as well as chatting, it can relieve the pressure for conversation sometimes.  Every couple is different in how they interact with each other.  Some are happy to hold hands and not talk, others keep busy, others avoid each other in their own house.  It sounds like you've been a team working together and maybe you can both reach out for that again.  This is not a battle but it's a journey you're taking with him  right now. 

Are you able to share how you are feeling with him?  Possibly things like the guilt you feel, how difficult this is, how much you care for him, how much you're going to miss him- these are only my ideas so feel free to ignore me if I'm interfering too much.  That may open up an avenue of easier talking for the both of you.            I hope you are receiving some support from the staff there hon. 

May I ask if you have a hospice near and if so is it possible to get him admitted there ?  You would be well looked after there as well as quite often care homes don't have the staff or training to care for very sick people.

Please don't be too hard on yourself,  just try to remember and maybe share all the positives of your life together and all you two shared before you both reached this painful stage of his life.  Let your friends and family support you so you have more strength to care for him. 

I hope your husband stays comfortable and that you realise that the best and most important thing you are doing is still visiting him and being by his side.  That's one of the very hardest things to do for someone ️

Thankyou for your kind words, care home is nursing care just down the road from me 10mins walk. Hospital arranged placement with palliative care team as he needed more care than I can give on my own. We do talk sometimes but he is very confused meds oxygen levels etc, alot on conversation is from years ago he seems to be in 80s and 90s then occasionally comes back to present. Care staff are lovely trained in palliative care so happy with what they are doing. Alot of husbands emotions are not accepting situation which he hasn't done last 2yrs.Very difficult for him, causes anger frustration he is fiercely independent. 

Sweep, hi, sounds like your husband's care is well sorted out for him and for you hon.  I'm glad the staff have training in palliative care, that's a bonus in most care homes.

I'm sorry he's confused but as you say it's unavoidable with all the physical issues he currently has.   

 I hope he is experiencing good memories from the 80's and 90's. I love the 80's music as I was 20 in 1983!

I don't know if this helps but in my work I met and cared for quite a few patients who had been non-accepting of their diagnosis/prognosis.  As they were becoming weaker and frailer their minds became full of the work they hadn't done in their life and I watched them wrestling with their conscience but unable to process their thoughts due to physical deterioration.  It could be a time of restlesness whilst they were very ill and unconscious.  This can be taken as a symptom of just physical pain but may be better treated like a symptom  of both. One of the best things about relaxing drugs e: midazolam) is that it will give the patient some clearness of thought in reality.  Your part here is so difficult hon  as you might feel so helpless and that teamwork you two had together isn't able to function whilst he is so poorly.  My heart goes out to you lovely lady, look after yourself XXX️

Thankyou for your support, I think I find it more difficult watching him as its not that I have no idea what's happening with him it's because I've seen it so many times as I've worked in care homes for about 23yrs,but it's harder to watch when it's your own. He has started asking me to do something help him with the pain and other than speak to nurses I can't do anything as I do same sort of job I realise he needs to take pain relief etc but he refuses, I just can't watch him in so much pain. Staff very good with him though. I believe more to the lack of oxygen refuses meds as I don't think he can make any decisions as doesn't understand what they are saying to him. I saw him yesterday more settled as he had taken pain relief also I took him cds of various artists for him to listen to as he has a CD player. Hopefully today is a calmer day..Thankyou again

Hello Sweep,

I hope everything has been going peacefully with your husband hon ️

Hi we've had couple of days where he was really bright and chatting, he then took a dip again sleeping and pain, see him yesterday, settled and comfortable, nothing else I can say, I just feel in limbo, I've not left house sit by the phone other than going to see him, last time I did got called to him, finding it bit difficult at the minute, but I suppose will have good days and bad days. Thankyou for asking x