Caring for husband

Hi Teatowel 

One of the positive things I feel about a number of the charities is how they recognize the needs of carers and of course there is even recognition from government with the introduction of the Carers Act in 2014 and of course alongside the provision of a care needs assessment we can also get a carers assessment, Of course there is a certain degree of practicality amoung this in that what we give for free would cost a fortune.

<<hugs>>

Steve

Charities aside, it might all work for you and I am delighted if it does. Walk in my shoes for a week and then offer some support if you you think I am worthy. 

I went from working although it was part time 22.5 hrs a week in a job I've & been doing for almost 37 years to being a full time carer for my husband. My GP signed me off with stress so I could look after him. Luckily I get full pay for 6 months. I felt like a nurse/ PA ,constantly chasing up appts arguing with GP receptionists trying to get his prescriptions which they refused to give even though they had been prescribed by the hospital & palliative team. No one seemed to read his notes. Our tiny living room became like a hospital bay with all his medical supplies for the district nurses & I had bottles of Jevity for his food pump stacked up in my porch & kitchen.. When he ended back in A&e twice the drs thought I was a ' medical professional' as I could ream off all his meds & doses etc & could tell them exactly what was wrong & list all his appts etc. Unfortunately hubby passed away 3 months after being diagnosed.He was in hospital for his final 3 weeks but I did all his care in there aswel.

The Macmillan team filled out the forms for us for attendance allowance.I would be worth you contacting them as the are a font of knowledge of what you could be entitled to.

Its also well worth trying to get a hospice place if you can. They are so supportive to yourself as a carer. We only managed to get a bed in the hospice less than 2 days before he passed away & I will never forget how caring the staff were there, to both myself & my hubby. I no longer worried about leaving him whilst I went home for a shower & a rest. I had been home less than 3 hours when they rang me to go back as hubby had become very ill so quickly. They literally sat outside our room during his last few hrs quietly supporting us, came in periodically to check we were ok, bringing us drinks. I couldn't thank them enough. After he passed they told us we could stay as long as we wanted.  they rang us a couple of days later to offer counselling if we need it. 

Hi teatowel, how are you doing today?

its a painful and tough road we walk when we are full time carers and ask who cares for the carers. 

My husband wanted to die at home so like you and detty, our living room became full of "stuff" and I slept on the settee. The hospice he was under were great, there wasnt much form filling, just the respect form which they did in discussion with him. If there is one in your area, please do get referred in, or in my case, I self referred. They offered me respite nights so that I could sleep in a bed occasionally.

I did wonder about one thing and Im not trying to be nosy but you mentioned having to get up for carers. Can you get a keysafe so they can let themselves in. If you are paying carers then they should be washing, dressing etc. So can they do that whilst you get breakfast ready? Some will also do meds depending on the type and whether or not they have to be specially trained. When I was facing this decision about carers, (in the end we didnt need them as he deteriorated before the care plan could be put in place), but I had to think, what would he need if I wasnt here or he lived alone?

Do you have family or friends who may pop in and runn the hoover round or help with other tasks? 

Also have you support from gp as a carer? 

I know the form filling and referrals to this that and the other is a pain, but it can also help. As an aside, the social worker at the hospice was brilliant at problem solving with me. I had regular contact with her and vented many of the things you have, but then she would help with a way forward. Yes its not ideal, the care system is pretty broken here, but she always started with. What do YOU need to nake things more manageable. Then we looked at possibilities.

Dont forget macmillan are also at the end of the phone.

Sorry if I have waffled on too much, there really are lots of people here who understand, so do continue to rrant etc, we all need that sometimes and sometimes it can help you feel less alone.

Hi Teatowel

I feel for you! My husband is in very late stage of bowel cancer with Mets (liver lungs adrenal gland etc) and now we are advised he has only a few weeks left. It is exhausting. I am so tired and frustrated. We have had to make a lot of quick changes to our house in a short time so he can be comfortable and I feel like there is no space that isn't filled with his needs. I am ashamed to admit how hard it feels and ashamed of my frustration. 

He is demanding and I understand that.  I feel so sad that we are not going to be old together. 

I know that some days are better than others but this is the darkest time for me. I can't imagine how hard it gets for you -but I understand or at least begin to - that in the chaos and fog of caring for your husband you just need to be heard? 

Sending a big hug. Find a corner and make yourself a cup of tea in solitude, if you can?  Xxx