and so it continues

and so it continues

Well it has been a whirlwind couple of weeks. Hubby home from New Zealand after 7 weeks with his kids, glad he did as it may be the last time they see him. Off to specialist with him as he is getting very deaf and I suspect early stages of dementia so doesn't understand what is being said to him. He now has MRI next week as they suspect prostate cancer, so I will now be spending my time between my appointments and his and working full time. I go to biologics clinic next week so I hope there is something so I can get my disease under control so I can deal with my husbands. Starting to feel slightly over everything at the moment. Imuran seems to be Ok so far, apart form the headache I have now had for 5 weeks and one of the heart medications is making my feet and legs swell up like balloons, but I will be off that in a week or so as I prepare for my cardiac ablation on the 21st of March. Apart from that I'm just peachy, thanks!

34 Replies

  • Sorry to hear you have your hands full not only with your diseases,but hubbys as well. Big gentle hugs from

  • Thanks Sylvi. It just seems to be one thing after another, I would just like something to go smoothly ad work for a change. How pleasant that would be! hahaha

  • Hi,

    Wow that is a lot of 'stuff' to handle! Be sure to start gearing up your personal support network especially around your hubby's condition - my dad had dementia and it was a rough journey all round - support is essential and we definitely should have rallied around to support mum a lot earlier than we did but the whole picture was not clear on short visits 4-5 times a year.

    I hope the cardiac treatment goes well for you.

    All the best


  • No one that can really help me as they all live away so I just have to suck it up. He is early stages thank heavens, gets confused by things, disengaged, forgetful and gets unreasonably angry but I am just biting my tongue and getting through it.

  • My father suffered dementia, and I was pushed in looking after my Aunt who had it as well

    Personally I would prefer not to see the condition again as it takes no prisoners and all you can hope for is there something else to take you over before the Dementia fully blows in.

    The State does not want too help and all they want you to do is flatten your estate then die before they will have to look after you.

    What gets to me are the meetings with Social Services and Nursing home, not forgetting sometimes the medical profession They like someone from the family there and when there you realise that there is little sympathy for the family.

    When the sufferer has to go into hospital they cannot wait to get the sufferer out of a bed and will if need be get the patient sent back to the nursing home at midnight. Sometimes they will even send the nursing home to do a pick up and again the patient will have to pay for that as well. So I suppose there is a hope in winter the patient will die of the cold, could that be the reason why they kick them out at midnight.

    Sorry for the venom it just sickens me how they seem to treat the elderly when this horrible complaint rears its head.

  • very similar here in Oz except the family has to do the picking up and dropping off, unless they came in by ambulance that ride is free, but you have to get them home again. I have watched a few families with dementia patients and yes they are treated like lumps of meat and the stealing of anything that isn't nailed down in nursing homes is incredible. Must be a lucrative side business for the thieves. I know what I am in for and it is why I am so not looking forward to it.

  • Not much help here but only that my 88 year old Granny has dementia and my 90 year old Grandad cares for her so I can only imagine how you area feeling handling your disease processes and your husband. My Granny goes to a local hospital for 3 mornings a week to a support group with other Demential suffered to give my Grandad a break. Is that an option in your area? It must be very tough. Just wanted to show support really. Your post really made me think as your operation is on my 34th birthday so I'll think of you. Sorry you are having such a tough time. Gentle hugs x

  • Thanks, he is only in very early stages so is still functioning just has episodes of interesting behaviour. He is 75 so has a bit of life left in him yet, depending on the result of his mri. I guess it will just be one day at a time and rest when I can

  • I hope you can get some kind of support. Even if it's just someone who will call round for a coffee. We've been in our present flat for about 7 years and recently found very sympathetic neighbours. We need one another.

    Dementia of whatever kind is hard, my mother in law had Alzheimer's and we wish it had been diagnosed sooner. But we did get support at home until the last six months. It's a good time to work on a support network and it can be mutual!

  • He doesn't think anything is wrong so I guess I will have to wait until he is ready to face it and get help. In the mean time I will just do what I can to cope. I have people around but they all have their own lives and busy so I just get on with it and cope as best I can.

  • Its difficult and hard to get things sorted. I know it sounds horrible but I'll put it like this - we had to get P's mother to get a will and give her two children power of attorney so they could manage things for her. It may be a way down the line, but I always think its best to anticipate problems if you can.

    I hope you can get support from around you, but do share with us on here if that helps


  • Thanks Cathie. I have already made him do that, my friend is a lawyer so she was happy to facilitate that. It is messy as he has children from two previous marriages and the second wife is a real piece of work so I feel better that he sorted that problem. I think what I find hardest is the anger and shouting it stresses me out and I sometimes can;t keep my cool and I snap back. I know I shouldn't but boy is it hard not to especially when he does it in public.

  • I'm relieved that you weren't upset by this rather indelicate suggestion. It sounds as though you're well prepared - and that isn't easy. I hope you can take some time for yourself, just from time to time

  • It is certainly going to be busy and working full time will be a struggle but I will just have to deal with it I suppose. I guess we will know more about his problems on the 12 March when he gets the results of Mri. I just hate this waiting stuff it annoys the hell out of me hahahah

  • I'm not good at waiting either. Keep talking though!

  • At least you guys have some idea what it is like. It is just human nature, if it hasn't happened to you most people don;t want to hear it or they only want to talk to you when they have a problem. I am pulling back from a lot of people it is easier than dealing with them.

  • Sometimes friends can be a problem. And things can be unremitting. Two days after my father died at 101 my rheumy withdrew my meds. I suppose that's life xx

  • Yes I am not sure how well I would cope if I was taking nothing. At least the 5mg of prednisone lets me scrape through the week, I am not sure the hydroxy has ever done anything for me and imuran certainly hasn't kicked in yet. But after nearly three years I am hoping these biologic things will finally give me some relief and I can feel like a human again.

    I have no idea how you coped with that.

  • It wasn't much fun. I changed doctors in October and the new one means business. I'm now on third try biologic. I hope you get them and that it helps

  • I only get to try 4 then it is too bad so sad see you later there is not much we can do. So I am hoping it works and no adverse reactions

  • How awful for you x

  • I'll live, a bump in the road I have to deal with

  • Hi someonesmother,

    you are having a rough time of it at the moment. If you ever need anyone to talk to please feel free to call the helpline on:

    0800 298 7 Monday - Friday 9.30am - 4.30pm

    Hope all goes well with yours and your husbands appointments and procedures.

    All the best

    Beverley (NRAS Helpline)

  • Thanks Beverley I live on Australia so not really an option hahaha Just feeling frustrated.

  • Hahaha, you could but it would be a very large phone bill! Did have someone leave a message on the answer phone from Canada once and get calls from France and Spain frequently. Hope things are better today for you.

    Best wishes,


  • Hahah yes and I am a bit tapped for cash at the moment with all these medical outlays coming up. i will be fine I just cannot believe that things keep happening. Oh well one foot in front of the other and keeping moving forwrad

  • You really have your hands full. I know from experience how much it takes out of you, and of course stress always makes RD worse.

    Your situation isn't going to change, but please remember to have some "you" time, otherwise it will creep up and bury you!

    It's something that I find difficult to achieve, but it's vital when you're in for the long haul .

    Don't forget that we're here for you. M x

  • Thank you. Yes I am going to have to pace myself. It is just the sudden outbursts that rattle me and stress me completely, he gets totally unreasonable. Just going to have to learn to deal with those. The one good thing I found out the other day after slogging from the car park to the hospital and back and complaining to them that their staff are parked in all the disabled parking spots close to the hospital, is that they are going to put on a courtesy bus from the car park to the hospital for people like me who it nearly kills to walk that far. It knocked me up so much I came home and slept for a few hours hahahah

  • That's good. Any little thing that helps....

  • Absolutely, it is a ten minute walk to the hospital from the car park it may as well be 20 kilometres the way it affects me. hahahah

  • What a difficult time you are having, but I am hugely impressed with how positive you sound. Don't bother to respond, but know that one more person is thinking of you. All good things, Jo

  • Thank you

  • Sorry you have so much to contend with at the moment, I hope things get better for you both soon. Thinking of you both, such a hard time for you. We just lost my husbands nephew to cancer at the age of 42, life isn't very fair at times is it.

    Gentle hugs to you and yours


  • So sad isn't it when someone young dies especially at that age they usually have a young family. So sorry for your loss. I lost a child to cancer when he was 6 so I understand.

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