I’m caring for my husband

Hi 

First if all you never need to apologise on here. We all get it. This is the perfect place to come for a vent or a virtual hug whenever you need to. 
Im sorry to hear about your husband  I understand that you feel like you wouldn’t want carers to come in at night but maybe you need to reconsider this - a good nights sleep makes everything easier to cope with and you do need to look after yourself.  
Would it be possible for you get out for a break while the daytime carers are there, or don’t they stay very long. Even just a short walk in the fresh air can make a difference - or a cuppa with a friend. Even a trip to grab groceries can feel like a good escape and a treat. 
I get what you mean about others not understanding. I am also the main carer for my husband (who is only 60) and he  is having palliative care only. For now my position isn’t as bad as yours as my husband is still mobile but that is expected to change soon. He had a stay in hospital recently where he signed a DNA - and while I knew that was what he wanted it was something else actually seeing it in writing. All of our family are very supportive but as much as they are there for us I don’t feel like they really get - there’s one person that I do think does but she lives at the other end of the country typically.  As hard as it it is for you to insist on it I think at some  point your hubby will need to accept that you can’t do it all on your own and he will have to accept care by other family members. 
I hope you manage to get a break soon but whatever happens just know that there is always someone on here to listen 

Hugs 

Jillybean 

Hi StellaStella3,  we already "met" in one of the other groups but thought I'd reach out here too. Sounds like you are going through a really rough time and  I feel for you both. Men can be so stubborn (women too I guess) about their medication and their care. I get it. I'm caring for my own husband- although caring sometimes feels like the wrong term to use as most of the time he's not too bad just now. 

I hear you about the medication and wouldn't judge. At least he's honest about not wanting to take it. Mine lied to me- said he was taking his steroids when he was actually binning them. He came clean when I was driving him home from a hospital appointment. Trust me - it was almost and emergency stop moment in the outside lane of the M8  "You're been doing what!"  His CNS gave him a severe row when she found out what he'd done. He's also declined any further treatment but still goes for his scans which is at least something.

I understand about not wanting folk  coming in when you're sleeping etc. Is it perhaps worth a chat with your GP  or local hospice to see if there's any other help available? Remember that MacMillan may be able to help too so it might be worth a call to the helpline. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. 

Friends and family who are saying that you need a break are most likely right but I understand how hard it is to "switch off" from it all. Please do persevere with taking some time for yourself, even if its only 15minutes to go for a walk. Caring 24/7 is tough and draining so you need time to recharge your batteries.

sending you a huge virtual hug. Stay strong

Wee Me xx

Sorry for the late reply. I am still learning how this site works.

I am so sorry to read about your husband. Mine has also  signed a DNR form. 

The carers only stay for about 10 minutes and I like to be here when they come so I can tell them exactly what needs to be done. I am lucky to have a very good support system with my children. They have been coming every day. One helps with a mountain of washing. I haven’t got a tumble dryer. The other daughter cooks us wonderful meals. When my children are here I allow myself sn hour of ‘me time’ where I take myself up just for a coffee or for a walk in the park, but then there’s the reality of coming home and starting all over again.

I agree, unless you are with the person 24/7 people don’t understand just how lonely it can be. I am having counselling and would love to be able to go to the place and speak face to face with the counsellor, but it wouldn’t be possible because sometimes I am called home by my children because my husband is panicking about something. 

Thank you so much for your reply

So sorry for the late reply. I am finding this site quite hard to navigate.

Hello again. Yes I remember talking to you on another forum within this group.

Oh yes when my husband was taking his steroids I followed him in the garden and found him hiding his medication in grass cuttings. 

Thank you so much. I will give MacMillan a call. They have helped with the financial things, but we haven’t been allocated a MacMillan Nurse. So it might be worthwhile contacting them, and finding out what things they can do to help.

i am having my 30 minutes break. Just having a walk in the park, but I miss walking with my husband. I also find reality hitting me on my way home because I know as soon as I walk through the door, it starts all over again.

sending hugs back to you too x

Hi

No need to apologise. I know what you mean about missing walking with your husband. I had a rare few hours to myself on Monday so decided to take myself off for a decent walk- but I chose somewhere that we used to visit regularly in the past,  so I spent about an hour sat on the riverbank crying to myself. Luckily it was a sunny day so I had sunglasses on    But as they say it’s better out than in. We’re all just doing what we can to get through the horrible times we find ourselves in 

Hugs

Jillian

Hi StellaStella3

I find a walk does me the world of good...till I turn and head for home. We stay at the top of a steep hill and every time as I walk up it I feel reality dragging me down but we just need to hang in there and keep going.

Hope all goes smoothly when you call MacMillan.

love n hugs

Wee Me xx

ps Loved the grass cuttings story. They're worse than children LOL