Lost it!

[ShelWhitt]

Been to dementia assessment for DH today. He helpfully said he could do everything more or less. I did say I kept a check on 'stuff'. Was asked if I was his carer. Said next of kin, and I supposed so, as there no one else. Not a helpful response, but that is how I felt , seeing as he was, in effect, making out he didn't need my help. Can't really see what it achieved anyway, other than an update. I was not feeling good, very reassured or happy. Said to hurse, I was in a far worse state than he healthwise, and it was me needing help! Then burst into tears. Carried on then bemoaning why no one offered help or advice, when we were both ill and in a mess.(Not appropriate, Not the nurse's fault I know, it just happened.) She then, helpfully said, she will ask the doc. if I can have a long term health assessment as well now, as you can now have them after 65. I am 77. Had ??fibro. for over 30 years and been diagnosed over 10. Feeling ill, deflated, tired out, and like I am on a treadmill. Does anyone on here have the answers, or does everyone on here have them, and there is only me who hasn't, and seems to be constantly ploughing through mud.!

[Lou1054]

All I can come up with is to contact Age UK, they can be very helpful with advice xx

[ShelWhitt in reply to Lou1054]

Thanks. Had a really bad couple of months. Hopefully things will eventually settle down. Been stressed out, feeling unwell and having lots of appointments, assessments, tests, physio etc. to arrange, and deal with, for both of us. Not easy when we don't drive..

[mouse2 in reply to ShelWhitt]

Are you in UK? If so, may be entitled to transport. Ask gp

[ShelWhitt in reply to mouse2]

Did get it last year for a few months when DH broke is foot, but he has got a blue badge and he walks with a stick, not too well. The sickener is it is me who is needing things but because I look OK and am walking about, everything I do is a fight and long winded, and to be honest at the moment I can't tackle any other stuff. Thanks for our help , I do appreciate it. Take care. xx

[rosewine]

If you go to ageuk.org.uk and search for Dementia they have masses of information and they give links to other organisations that can help and also links to support groups. Sometimes ones if you can just talk to someone in th same situation it can lighten the load. You should be able to refer yourself to social services for a full assessment of your husband's needs and your own needs should be taken into consideration as a carer.

When you are married you the to think he is my husband/wife and don't actually think of ourselves as their carers but we are. My husband has multiple health problems as I do and his are both physical and mental as he also suffers with depression and anxiety. I hate admitting it but when I am feeling particularly bad myself I find I difficult to support him as well but have to as there is no one else and sometimes that can feel very lonely.

I do hope you can get some help. Take care.x

[ShelWhitt in reply to rosewine]

You have undertood so well. "I hate........lonely" expresses exactly how I feel, but it is me with the anxiety and stress, and he does find it difficult to relate to my constant pain and mental problems. He does his best, but like you say it is not easy when you both have multiple health problems. the day to day stuff is manageable but it is all the extras that causes the problems. Take care. x

[bobbybobb]

Was you not in a position that you could have told the nurse that, in fact your husband was needing a lot more help than he was letting on. I'm not saying that things would have been any different but when people have the full picture changes can sometimes happen. You have so much going on yourself, looking after another person would be to much for any of us. So considering what you have been doing, you deserve a pat on the back but you probably never get it. Also it was appropriate for you to express your frustrations to the nurse and hopefully she would have logged this down. You are in much desperate need of a rest. Are they going to arrange a long term health assessment for you. xx

[ShelWhitt in reply to bobbybobb]

II haven't expressed things very well. He is doing things, but with more difficulty than he admits. I pointed that out as tactfully as I could but it is difficult without making your husband look like he is lying, and he does help with practical jobs around the house. I don't want a pat on the back, it is what we all would do in the circumstances, it boils down to the fact that my problems make it even more difficult. It seems a contradiction in terms, but in some respects, a rest wouldn't help, as I need to keep myself occupied to distract me from my pain. thank for responding. take care.

[ShelWhitt]

Thank you Mydexter. Everything is a nightmare. Told nurse I thought I had had one at 75. But to be honest, and it is a memory test, she only asked me the same questions she asked DH. She supposedly looked it up on her ipad, but couldn't find it.! Modern technology is brilliant until you actually need it! And on a physical level we are managing, albeit slowly. We don't actually need physical help at the moment, and he isn't at the stage where he will go to a day centre. I know it would help me. But he is in denial to an extent and would refuse to go. Neither of us can walk far, but It is my brain that is causing me as much more trouble as the actual pain, and is making me feel helpless. Brain fog, memory loss, lack of concentration, and struggling with the organisation and coordination of stuff. And then having to double check everything. It is tiring. There has been so much going off I've have lost track to a degree, even though I write things down, But I think it is in the pipe line for arrangements to be put in place, in case I need to go into hospital for eg. Take care x

[ShelWhitt]

Thanks so much. Everyone on here is so understanding and caring. xx

[Hidden]

I don't know how you cope day to day with the pain that you are in! You must be a very strong lady! Having read most of your previous posts I really respect you for all that you do

[ShelWhitt in reply to Hidden]

Thank you Malmal. I really appreciate what you say. It does give me a lift to hear that. I have always thought myself to be a strong person, having had to deal with several traumas in my life, (as most of us have), but I must admit this is testing me more than I have ever been before. Best wishes. x

[ellj]

Hi ShelWhitt, I totally understand that you burst into tears. As a retired nurse I do not think your distress was " inappropriate". You were feeling ill, needed someone to understand that. I hope you get some help to cope. Sadly the help we need is just not there but certainly your. GP needs to know that you are feeling so ill and still have to be a carer. It should be recorded on your notes. Perhaps you could get an assessment from social services to look at what help could be useful and available to you. Sending you a virtual hug xxx

[ShelWhitt in reply to ellj]

Thank you ellj. Much appreciated. My GP is aware how ill I feel, puts it down to fibro. and tends to listen when I offload. I will definitely have to do something about it. It is finding the time and energy, when I feel ill, and everything has been about DH for last eighteen months, with his diagnosis, and then breaking is foot, plus several other medical conditions to deal with. I am on the back burner. We will get there in the end - hopefully!! Take care.xx

[TheDrivenSnow]

ShelWhitt, I hope you are able to mobilise support. You so deserve it. Please try to ask your surgery if they have an assistive outreach service for people in the community. I have been helped in the recent past by the community wellbeing officer attached to my surgery and reporting back to my GP. Please let us know how you get on x

[ShelWhitt in reply to TheDrivenSnow]

Hi there. Thank you so much for your support. Being able to offload on this site and have people not only listen but understand means a lot and to be honest is helping me get through each day at the moment. It is no one's fault but everything is a nightmare. Absolutely nothing is going to plan. There is problems with absolutely everything ,and everything seems to be revolving round my husband, (not his fault) I am running myself ragged trying to deal with his medical needs, whilst trying to cope with my fibro, which is obviously flaring. I feel ill, am not coping and I am just weary with it all. Just one case in point I went to hospital today for an ECG test. (managed to fit it in between the other stuff) and was asked if I was well in myself!!! I said, well no not really, I suffer with fibromyalgia. The nurse/technician said I have never heard of that!!! I gave him a short version. Pain everywhere, brain fog, digestive problems, palpitations, for a start. Explained that I had been sent there because doc. wanted to rule out heart problems before putting latest symptoms down to fibromyalgia. He said mark down on the chart if you feel any different at any time. I said OK. And so it goes on! I look OK, am walking about and to everyone I know I am fit and well, even my family!!!

I know from reading your posts, my woes are nothing compared to yours. I only wish I could offer some words which would help. I hope you are managing to feel reasonably well, and are getting all the help and support you need. Love and hugs. xx

[TheDrivenSnow]

Of course you are weary with it all! You are dealing with issues at multiple levels - and with two unwell people - not just the one. Double the burden, so to speak. It's hard enough for someone who's able-bodied and well in themselves to care for another human being, let alone someone who is medically compromised, whether or not those symptoms are acknowledged by others around them. It's almost like having to justify your own maladies in the face of cynicism and mistrust. The fact that not many people acknowledge fibromyalgia as a bona fide condition or syndrome makes it so much harder to be taken seriously. At minimum, as a carer, you should be offered support in the community. Please ask your primary healthcare provider (GP surgery, walk-in centre...) for outreach support. It is out there, but not many people are aware that they can draw upon this resource. They offer a range of assistive initiatives and interventions. Don't leave it a moment longer. It's time to start focusing on YOU.

You are very kind: I am coping as well as can be expected on a day-to-day basis. Apart from incessant pain, the hardest aspects of my illness are my weakened immune system, the uncertainty I have to contend with every single day and the knowledge that my children are hurting. I wish I could reassure them and have them believe that reassurance. I am lucky in that my wonderful daughter (who lives at home) helps me hands-on with basic tasks and is my go-to anchor - and my equally wonderful son (who lives away but comes home regularly) is a constant source of practical and emotional support. I couldn't have asked for lovelier children or a better support system. Of course, I am supported by my local hospice, too, and by close friends and my extended family. I have three beautiful therapy dogs, too! And the friendly people on this site never let me feel alone or unsupported - day or night. That's the great thing about the internet: for all its faults, it brings people together and that is a stupendous thing!

We all have our own narratives, our distinct journeys. No condition is more or less affecting than another. If it impacts our life, it matters. I wish you all the very best in identifying some effective resources and harnessing the support you so sorely need X X