1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Geoff

    Geoff Registered User

    Jun 5, 2004
    12
    Hi everyone,

    I have visited this site often and have taken alot of useful information away with me that has helped in looking after my mum on a day to day basis. Knowing that some of the "strange" behavier patterns are "normal" and that other sufferers of this illness go through the same thing and that carers face and deal with the same problems as each other seems a comfort. Knowing your not the only one helps in inself. I thought I'd contribute with a recent problem we faced as a family in the hope that if any one else faces the same situation they may get some comfort from knowing they're not alone.

    Here goes....

    To give some background.......My mum was diagnosed with alzheimers 7 years ago at the age of 53. Since then she's gone from helping everyone in whatever way she could to having to be helped in every way.. She can no longer speak ( I didn't use communicate here as we know by her facial expressions and the noises she makes if she's in distress or wants a drink or food etc , so this is a form of communicaton )She can walk only if guided and suffers from bouts of extreme pain due to bowel problems on a twice daily basis. Even through this she'll still have a smile or laugh for anyone who comes to her.

    I hope this isn't too long winded but here it is....

    About 10 months ago my dad noticed a discharge coming from my mums left breast and immediately contacted her GP who told him to keep watch to see if it happened again and in the meantime he would send a letter of to the local hospital so a thorough examinaton could be carried out. About a month later the appointment came through and after the examination nothing untoward was found.

    At this point a great wave of relief comes over you, you've imagine all sorts and wonder if it is the worst how you'll ever explain to someone with advanced AD that they have more health problems. By the way my mum is great at all her appointments she just lets the doctors get on with it!!!!

    Fast forward three months ......

    My brother came down the stairs( a Friday morning ) to be greeted by a very worried looking nurse ( mum has two that come to the house in the mornings to get her up, washed and dressed, ready for the day centre ) who asked to speak to him, she had discovered a lump in my mums breast !!!! Once dad knew he contacted the GP again and he in turn set the wheels in motion to have the lump investigated at the breast clinic by the consultant. Three weeks later and my mum was at that dreaded ( for us anyway ) appointment. After a needle biopsy the diagnoses was given...mum had breast cancer!!!!!We were all devastated to say the least. The plan of action was Tamoxifen......

    We pinned our hopes on this drug and hoped beyond hope that it would shrink the tumour not wanting to think to hard about what would happen if it didn't. Unfortunately it DIDN'T after three months of treatment and so mums fate was to have a mastectomy three weeks later....

    We were in shock and wondered how mum would cope with the operation, the pain afterwards and as she was having nodes removed from under her arm we wondered if she'd loose the use of that arm and how we'd guide her along if she did and how we'd get her in and out of the car etc,etc. So many unknowns. A hard enough operation for any woman but for someone in the throws of advanced alzheimers........

    Operation day came and a full mastectomy with 22 lymph nodes was performed...Went up to the hospital that night ( actually at this point I'd like to say that the staff on the breast ward were second to none. Once they knew of my mums situation and that my dad would be staying in the hospital with her through out, they moved her to her own room and brought dad a recliner chair to sleep on. We could never repay them for the way they looked after not only mum but made sure we were ok to.)and not knowing what we'd find walked into the room and there was mum looking fine, you'd never have guessed she'd just had surgery and after all the worry of her arm stiffening one of the first things she did when she came round was to sratch the back of her head with her now "bad"arm. RELIEF again.

    The "bad" arm is the arm on the side of the mastectomy where the lymph nodes are taken. Taking the lymph nodes can result in other conditions where the arm swells up and becomes painful and very stiff, this was a major concern as we guide mum along by the arms etc and by putting pressure on it , it can bring on a condition called lymphadema the symptoms of which are above!!!!It amazing how much you learn when you care for someone who can't learn for themselves!!

    Every day she got better and better although it was decided that instead of sending her home and then bringing her back in a few days for her pathology results as is the normal she would stay in until the results were known. One week after the op the results came back... out of the 22 nodes removed only two showed any signs of disease, this was the best possible result and for days we were elated. The wound healed really well, the drains were removed and 10 days after going into hospital, she was discharged. That was 2 months ago and presently mum is doing really well. Her treatment now is a drug called Arimidex which has shown great results in the fight against breast cancer.

    I've titled this mum an inspiration, because thats exactly what she is. After living with AD for seven years and still being able to smile, living with bowel pain on a daily basis and STILL being able to smile and then to finally being diagnosed with cancer and losing your breast and still smiling through it all, what else could you she be.The love pours out from her and effects the people she comes into contact with. The nurses cried the day she left hospital and kisses and hugs galore were given. It makes us proud to be her family when people react so warmly toward her. What a special lady, even alzheimers couldn't rob her of her warmth and loving nature!!!

    Good luck to you all ,I hope your mum, dad , relation or whomever is affected by this illness still gives you as much as we get from our mum.
     
  2. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    HI GEOFF how sad your wonderfull mum has to suffer so much ,on top of the most dreadfull A/D,your love and pride shines through for her ,she so deserves this ,keep us updated.ANGELA.
     
  3. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Hi Geoff, I'm so glad to hear your mum is recovering well from the surgery, it was also nice to hear that she was given good care when she was admitted to hospital + that your family was looked after as well, I'm a nurse working on a ward where patients are admitted for breast surgery + it's good to know that there are other wards in other hospitals that patients get the care they deserve. The ward I work is very busy but we as a team are determined to give the best care possible, + if your mum had been to admitted to our ward I'm sure the care she would have recieved would have been 1st class, we try our best to make sure the patient + family are given the best possible treatment + care , it's reasuring to know that some people still appreciate nurses + doctors , it's a difficult job at the best of times + there is so much bad press in the papers , it's nice to know that the right care is given + patients are being looked after in other trusts as well. I'm not blowing my own trumpet , but we have a good team of nurses + doctors on the ward I work + we strive to deliver excellent care + look after the patient + family as a unit. Best of luck for the future, best wishes . Rosie x
     
  4. Jo D

    Jo D Registered User

    Feb 28, 2005
    5
    Essex
    Hi Geoff

    I have never written before. I always seem to spend so long reading and absorbing every ones stories, particulary since i still cant believe that others have been affected by AD in the same way as me.However, my Sister is fantastic at contacting people and she was the one who told me about this website. Infact when i read "our story" on here it brought me to tears as it was the first time i had ever heard her express herself like this. Rather than re tell our story you can read my sisters posts. Michelle A.

    Anyway, I realy felt the need to write to you. Your experiences have been awful and what your Mum has gone through is so sad and unfair. I agree that your Mum is amazing and a total inspiration, you must be so proud of her, but, you too are an inspiration, especially to me. I have been very bitter for a long time about what we have had to go through but hearing your strenghth gives me some encouragement.

    Keep strong and keep smiling xx
     
  5. Geoff

    Geoff Registered User

    Jun 5, 2004
    12
    Thanks

    Hi everyone,

    Just wanted to say thanks for all your kind words and for taking the time to read about my mum. It was nice to be called an inspiration, I'm sure I've been called plenty of things from time to time not nearly as nice!! On the issue of feeling bitter, I never have, sad yes and of course it would be lovely if things we different but they're not. The energy wasted on bitterness I'd rather spend giving my mum the care she deserves and needs.I look at it like this, she brought us up ( I've two brothers ) and I'm sure made sacrifices etc along the way, we couldn't have asked for a better mother or father for that matter, now however the tables are turned and she needs our help and its a pleasure to be able to give something back to her in her hour of need.

    This next part is like a diary for the past two days just to show how quickly things can change..........

    Picked mum up from the day centre these past two nights and her form couldn't have been more different on each occasion.
    Last night she was full of smiles and hummed all the way home, a journey of 10 miles. I was able to get her out of the car and into the house with no problems and when she sat down she was aware of all that was going on around her. It was great, I left her feeling good and went to the gym full of the joys of spring!!!

    Tonight on the other hand Spring seems to have sprung!!! I have just came back after being with mum and feel worried/sad, she just wasn't herself. The start of the evening wasn't too bad, picked her up and got her into the car with no real problems but she just wasn't as aware as Thursday night and it seemed as if something was bothering her. In the house she just stared into space and there was no response when you touched her or called her name. I helped my dad get her into bed and waited around for a while until she fell asleep, I don't like to leave my dad alone if things don't look quite right with mum.She seemed to be having small jerks from time to time but its hard to know if they were isolated seizures or she had started to drift off and then came back with a bang like we all do on occasions when falling asleep.If only she could tell us.

    I was wondering on the drive home if the new drug she has been prescribed to treat her breast cancer is having an effect on her, some of the side effects are really harsh. When you think of AD you automatically think of loss of memory but it has been my experience that that symptom of the disease is far less serious/troublesome ( can't think of the right term) than some of the others. The loss of speech brings so many problems its not true. Someone in pain/ill and not being able to say!!! it would be unimaginable if it weren't for the fact that we're in that exact situation. The memory thing seemed like a problem back in the early stages, just after diagnoses, but now seven years on, I'd sell my soul to go back to those " it's just memory problems " days!!!

    To anyone who is caring for someone who still has the luxury of speech, treasure the conversation though matter how confused or muddled it seems.

    Well I'll bid you all goodnight and hopefully tomorrow all of the loved ones that we care for will have good days which in turn makes our days better ones.

    Take care of yourselves. Geoff
     
  6. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    You are so right, Geoff: one of the hardest things to accept is the huge difference between a good day / bad day (sometimes it's not days but moments), and whilst 'looking back' to what things were like a year ago, or two or three or more is quite scary, it also makes me grateful for what we still have, and more tolerant, as sadly I know that it can only get worse ....
    Day to day, and hang on to the good moments!
     

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