unsupported and very much on my own

[Nichod100]

I am continually angry and frustrated with everything and everyone that I have to deal with regarding my husbands care . I am constantly told I’m amazing and how lucky he is to have me . He wouldn’t still be alive if it wasn’t for me , I am essential to his survival !! Well let me tell all those Health care professionals something ITS CALLED LOVE 😡 he isn’t lucky and I’m not amazing he is my husband , my best friend , and my life . I know this cruel , wicked disease will take him from me but I’m damned if it will be a day sooner than it needs to be . I have been with him when he nearly died and I got help eventually ! He needs 24 hour excellent care and I am the only one providing it . But it’s so hard to fight and get medical help , understanding and support. I believe he lives or dies because of me and the responsibility is overwhelming . I know I will feel as if I’ve let him down when the end comes because thats how the medical profession make me feel . The most recent thing is a Community Matron changing his catheter change routine . No more prophylactic antibiotics which I am nervous about but on board with . Have urine taken three days after catheter change when the bugs have had a chance to colonise and treat early if needed . I manage Richards skin on his bottom , I drive to surgery and pick up patches to use . I also treat toe nail infections with dressings and keep antibiotics to start . All that so I don’t use District nurses unless necessary . Yesterday I found out I have to have a syringe and needle and do the urine sample myself . Yet another stress and responsibility . The DN’S wont do it apparently 😡 my reply well ok let’s not worry it’s only to protect a life ! Nothing important here ! I am soo angry why is the support not there ?? I only use it when I really need it . I maybe essential for his survival but on one person it’s too much 😡

[FredaE]

we can't do anything practical to help but w e are here for you to let off steam. Better to us than your medics. Suggest you go to YOUR gp ad say you are at the end of your tether and YOU need help. you sound too competent and they are not being helpful becauase they think you can cope. Is there a reason why you are tryng to avoid the district nurse.? you need and deserve help even though it is hard to ask for it.

[Nichod100 in reply to FredaE]

Thank you for replying , I do intend to speak to the GP this week and explain . Your right I am very competent but I feel I have no choice but to be . I’m not trying to avoid the DN’S I try not to burden them if I can manage things . I respect that they are stretched and their time is valuable . I won’t be so helpful in future though if they cannot help me when I need it ! Not an attitude I like to have but enough is enough ! I do ask for help but it never seems to get me anywhere I’m afraid .

[Yanno]

Hello Nicky

I'm so sorry you and Richard are going through this, it seems so unfair. Sadly I think it pays to 'be known' by the DN's as I suspect through trying to not burden them they have not realised your true needs.

We are lucky to be in a village community and like you we try not to unnecessarily use the DN service however when I had Covid earlier in the year (caught from a generous friend who didn't want to keep it to himself!) I was at a loss as I'm the only carer for Jackie and I could hardly get out of bed let alone do everything for her. The DN's really stepped up to the mark, visiting four times a day and going well beyond what they needed to do.

I think it's sometimes difficult to express to a doctor how we feel, particularly when it includes negative comments about his service. Perhaps you could show him your post on here and say this was how you felt today and you really don't want to feel like this again...what does he/she think you should do?

Good luck, Take care, Ian

[Nichod100 in reply to Yanno]

Thank you for your reply . We are known to the DN’S as Richard is catheterised and they have been to us quite a lot . You are very lucky with yours which is great . I am always polite and respectful with all health care professionals but whatever I say or do nothing makes a difference I’m afraid .

[Derkie54]

Hello,

Lovely post, I feel for you as you are doing so much, no wonder you're a bit down with it all.

We went to the hospital for my wife's bi-annual assessment recently. For every question on who does what for my wife my answer was " I do "

They said to my wife, we could all do with a Derek couldn't we, it was meant as a compliment. I thought, I don't want a compliment I could do with some help. But it's means tested and we would have to use the savings we've built up over a lifetime to get any help.

Unfortunately for us both the health system is under strain and the fact that we paid in to the system for 50 years seems to count for nothing.

We've accepted the MSA and we're not looking for an exciting life now, but an easier one would be nice.

Keep smiling where you can even though it's not easy, if I wasn't here I know my wife would be in a nursing home and she wouldn't want that.

Take care

Derek

[Nichod100 in reply to Derkie54]

Thank you for your reply , I understand how you feel . It’s hard but somehow we keep going for our loved ones . It’s all we can do x

[MF31]

my husband just came out of hospital after having supapubic catheter fitted we were having problems and I rang DN,s answer phone picks up when I eventually get call back they wouldn’t come out had to call rapid response and when she flushed through could see things weren’t right so next morning spent our day in a&e I just think they leave the partner to deal with it but we really do need help and back up and it’s a worry with infection.

[Nichod100 in reply to MF31]

Thank you for your reply , I’m sorry you also feel let down . I hope your husband will be ok now x

[Hidden]

you have every right to be angry. You know we all are doing the same. You aren't the only one. We needed help from District team, I was told they were stretched and couldn't commit to regular visits. So reluctantly we ended up with an indwelling catherter. I asked who would organise antibodic cover and told they don't do that now. I rechecked with the doctor when my husband became ill again from yet another infection. We are now the care protection for our partners. It's hard because our love is the same but how we live is so different. I too am the person who has to recognise and get appropriate help. To be honest as stressful as it is. We are better at caring for our partners. Largely due to the fact my husband never wants to go into hospital again. Your message resonates whole hearted what many of us feel. Kind regards Sharon xxx

[Ovx823k]

Deep respect to you I’d the same for my wife.

[Helenhooter]

I think you speak for us all xxx

[Hidden]

Yes I think you speak for us all too. Sometimes I imagine one or 2 of us going on the listening project on radio 4 to educate people on what its like.

Or the personal stories bit on the bbc news website. Sadly my dads passed now- I think it would be more impactful from someone who is still caring. Not necessarily you though- you sound pretty busy! ❣️

[JJAJJ]

I couldn’t agree more with your comments. My husband also has profound Orthostatic hypotention which is complicated and needs 24/7 attention. I am on my own trying to manage this problem. Through research and listening to people on Health Unlocked I have had to bully his Parkinson Dr for medication to try ! I pray to god he never has to Into hospital because no one there understands MSA or OH based on previous experience. Good luck Nichod x

[Nichod100 in reply to JJAJJ]

Thank you and to you x

[TK-67]

It is worth contacting your local hospice, they can provide support for you both and often 'nudge' GPs. Have you asked for a care assessment from the council?

[Nichod100 in reply to TK-67]

Thank you for your reply , am involved with the Hospice . What would a care assessment do ?

[Way3121]

hi, I feel very much as you do, and I’m sad to say I couldn’t cope and my brother is now in a home, it was a mutual decision, but I feel so guilty, it eats at me every waking day. I thought I was the only one continuously angry with everyone , I still am now he’s in care , but now angry with myself too for not coping when I cared for him 24/7. I just want you to know That I appreciated your words and your honesty, please take care

[Nichod100 in reply to Way3121]

please don’t feel guilty , you know you did your best and neither you or your brother could ask for more . He obviously understands how hard it was for you . It’s a shame we have to feel this way but so often the system lets us down . Unless you live it people just don’t understand and we are a small and exclusive club . Take care of yourself and praise yourself for all you have done and continue to do x