She's my Mum and I love her.

Discussion in 'I care for a person with dementia' started by flowerpetals, Mar 10, 2015.

  1. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Hello there,

    I'm new to this forum although I have replied to a couple of posts in the past few days. My Mum is in her 70's, has been recently diagnosed with Alzheimers. At Christmas she was very poorly, had 3 blood transfusions and was also diagnosed with Crohn's disease (inflammation of the bowel) she will have this for the rest of her life too :( Things have settled down thankfully, she is now eating like a horse again and she has more energy. Her memory is a bit haphazard, there have been a few dramas but nothing really to complain about. She is ok in a familar situation but not when she's unsure of things.

    Although, I'm trying my best to be positive, I'm finding myself in tears over the past week and I'm not usually like this. I don't know if it's because my Dad died exactly 2 years ago from cancer. It was cruel and nasty, he suffered for far too long and right now, I really miss him. It hit my Mum really bad and I feel angry that life keeps throwing such bad cards at her. When she was in hospital, she was trying to help the other patients, she fed a lady who had had a stroke and comforted her, she made lots of friends even though she was so sick herself. My Mum is a fighter and will be right to the end.

    I have noticed a few changes over the past few months. My Mum sometimes loses track of conversations, she's fine with myself and my husband but if someone phones her up and she doesn't know them, she will throw the phone at me. She says she "can't really hear them" but I suspect she can't process the information. She has been repeating herself quite recently and quite forgetful although yesterday at the memory clinic she suprised me when she quite proudly said "Nice to see you Dr McConnell. I even remembered your name!" Even though she has only met him 4 times. It made me smile, that's my Mum trying hard to fight this evil disease. She said to me in the waiting room beforehand "I wonder of he's going to ask me all those silly questions again?" Bless her, I think she was trying to remember the answers and be ready for him :D

    Mum agreed to go along to the clinic again so return in June. At that time, they will review her Aricept and if her stomach is still ok, they will increase it to 10mg. I really feel for her, so many other tablets. I fill up her doset box each week, it's a good plan so far and helps her a lot. At the moment she is living alone, I live nearby and see her about 5 days a week. She goes out to the day centre and to see her friend on another day. I am lucky that I still have this precious time with her, it scares me all the other stuff I have been reading. I hope we have many more years like this but I have noticed the little changes and she isn't well. Her hair has become very grey recently, she has definitely slowed down with her walking. It really frightens me what may lay ahead, although I know I should live for the now. I suppose in a way, I have started to grieve for my Mum too, I have already been through it once and it wasn't that long ago. I never really grieved properly for my dear father, I was too numb and went through that time on autopilot and disbelief but when I think of them both together, it makes me cry. I wish there were lots of magic pills to cure all these horrible diseases. And a time machine :)

    Does Alzheimers go up and down? I mean, is it common to have good days where my Mum is remembering lots and then bad days of sheer confusion and disorder/panic? Mum was very disorientated when we took her on holiday last year although she was undiagnosed with Crohn's at the time and she thought she had cancer. She was also very confused when we went to France for an overnight trip. I wish they were all wrong about the Alzheimers diagnosis. It really does scare me. I'd be really grateful with anyone sharing their thoughts...thank you for reading.
     
  2. Goldi

    Goldi Registered User

    Mar 9, 2015
    10
    I do feel for you.

    Nothing in life can prepare you for the challenge of having a loved one diagnosed with alzeimers. It is such a cliche but from my experience the only thing you can do is take it one day at a time. There eill be days when your mum is bright and calm and happy and there will be days when she is sleepy and non responsive or other days when she is agitated and angry. Some days she may have periods of all 3.

    She is lucky to have you and whilst there will be times when she is angry and rude to you she will also know deep down how much you care and it will mean so much to her.
     
  3. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,514
    Female
    England
    Hello,

    The best advice is what you already know, take it a day at a time. Yes there are lots of problems ahead but your Mum may not experience many of them. Anticipating them is not going to help you. I think we must all feel at times frightened and overwhelmed by dementia, I know I was, it is understandable. At the beginning I spent many sleepless nights worrying about our future.

    My husband was a very quiet man and when in company listened more than he spoke. Many people did not realise that he had actually stopped speaking. As his memory deteriated he could not follow a conversation so replying was impossible. In a family group he would play with the children, avoiding being part of a conversation so no one, other than me realised what he was doing. Dad was just being Dad.

    Please us TP to help you through this. You will never be in your own, we can all help each other with advice, support and an ear to listen to your rants when you want to scream.

    Take care and keep posting.
     
  4. Concerned J

    Concerned J Registered User

    Jun 15, 2014
    65
    London
    Hi Flowerpetals,
    I've noticed my Mum has good days and bad days (sadly I think the bad days outway the good).
    On good days if we've chatted about something from the past (my childhood for example) she will join in and remember people & things.
    She can't cope with being with more than a couple of people at a time and is depressed.
    Dad died suddenly, with no warning almost 5 years ago that plunged Mum into a downward spiral. A further tragedy in the family a year ago hasn't helped.
    I can't relate to almost everything you've said. My Mum however is in good health apart from her Alzheimers .
    I hope I made you feel you are not alone. As you said "She's My Mum & I Love her". I couldn't agree more.
     
  5. lin1

    lin1 Registered User

    Jan 14, 2010
    9,320
    Female
    East Kent
    #5 lin1, Mar 10, 2015
    Last edited: Mar 10, 2015
    Hello Flowerpetals.
    Allow yourself to be how you need to be, obviously not in front of mum. It'so not only ok to cry it's good to cry trust me I've done lots of it over the years and not just with my mum who had mixed dementia, sometimes it's the only thing that has helped me get through things !

    I'm pretty sure you are now grieving for your Dad as well. cancer has been a curse in my family too ,

    I remember when I was new here and started reading some of the posts . It was , still is pretty horrific reading at times but it helped me prepare and plan for the possibilities. Hun just because you see lots of horrid things when you read on here , it doesn't mean they will happen to your mum.
    Though my mum was in the late stage of dementia when she died. Virtually bed bound , puréed meals , she still enjoyed her meals, treats often with gusto:), with my help she could walk to the loo , was able to tell me she loved me. Their were other good things too !!!. Yes you will have some bad times I won't deny it, but now you have found us ,you know where to come for advise , cyber support or even a rant.

    As you read people's posts on here read our taglines , you will come across many that are true and uplifting one of the ones that has always stood out to me is
    ' Once you have seen one person with dementia, you have seen one person with dementia '.

    Though un asked for I'm going to give a couple of bits of advise , apologies if you already know.
    If mum has a sudden downturn , even if mum doesn't have any signs of being ill. suspect an infection, UTI's ( urinary tract infection) and chest infections are the usual culprits

    Get the legal things sorted , things like LPA's (lasting power of Attorney)
     
  6. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Thank you all kindly...your words have really touched and helped me. It is nice to know that I am not alone on this, although I wish we weren't all going through this.

    Tomorrow I am taking her to the hospital, she has another outpatient appointment. They phoned her last week and told her to come in. She told them to send out a letter but they didn't. I phoned and found out the time and that she is going in for an investigation procedure...she said she won't have it! I don't blame her, she's been through and had enough. We will still go though as they need to keep an eye on her.

    I really appreciate what you have all said, especially that my mum may not experience all of the problems that other's go through. I think that is probably true. I think the anti depressants have helped her a lot, hope it continues. Thanks again and I wish you all the best with lots of happiness and strength.
     
  7. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Thank you for your helpful and sensible advise, I really appreciate it.

    P.S. I also blame the spell check on my many mistakes :D
     
  8. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Hi jaymor and thank you for your reply and for welcoming me into the forum. It's very interesting but sad that your husband stopped talking, especially as he was a quiet man to bein with. I suppose theres so many aspects to dementia and not everyone will get the same symptoms as other people. I can't imagine my Mum not talking, she's the very opposite of your husband, in fact she doesn't stop sometimes! But when she's in a group of more than two people, she doesn't really join in unless it's a topic she's familar with.

    Thank you Concerned J, it is nice to know that I am not alone. It's sad that we are all here but that's life I guess. I'm glad that I found this group as it will be good to pop in from time to time and also offer help to others. It's not an easy path to take.
     
  9. pinky80

    pinky80 Registered User

    Feb 10, 2015
    9
    #9 pinky80, Mar 11, 2015
    Last edited: Mar 11, 2015
    Hi

    I have just read your post and can identify with near on all of it. Im new to the forums so have recently been reading some interesting threads that are opening my eyes to this horrid disease...

    I find that my mum used to have more good days than bad (ie less than 25 panic phone calls a day) and then there are the bad days, the really bad days where I cant see a way forward with anything. I feel hopeless, sad, extremely angry and totally upset most of the time lately.

    I did chuckle tho because my mum did and does exactly the same with the clinic appointments, although she clearly writes it on her hand where the Dr's can see her reading the answers back. She also will answer the phone and throw it in my lap if she doesnt know who it is.

    Ive recently been aggressive in my tone and patience with her and im feeling very guilty about that and Im trying very hard to change my approach especially as we have last week moved her to a new flat which is something she wanted but is finding it difficult to settle in and accept it as her flat. Fingers crossed this is the transistion period and it will settle but I am worried, very worried that she may cause issues to the other residents around her and she be asked to leave (unsuitable tennant) The second night she was there she went wandering around and walked into someone elses flat and scared the lady half to death..........I managed to find her after a frantic panic of searching the streets and the resident she walked in on was very unhappy with her and this has had a huge negative impact on her settling in. She feels like the new kid at school whos not welcome and she has 0 confidence.

    I have a partner who is amazing and is along with me my mums main carer. Its straining everything in our lives (both of us take time off work to attend appointments or deal with emergencies etc plus the lack of time we get together) and we thought this move would be great for mum as her flat is literally just round the corner from where i work, but today I have a lot of guilt hanging over my head and I am scared of the situation I have put her in. Fingers crossed she settles in and things lift and become more positive during the next few days.

    My plan is to try and stay positive and deal with any issues that come and if I have made the wrong decision about her move, then I will do everything I can to make her happy and safe elsewhere and echo what jaymor said of taking it a day at a time. Ive tried to make the dementia "go away" but you can't.

    Bit of a negative post from me but I hope you keep posting. Theres some great advice on here :)
     
  10. irishmanc

    irishmanc Registered User

    Jan 14, 2015
    64
    Manchester
    I really relate to your comment about feeling aggressive when dealing with your mum. I do think it's a logical and rational reaction to a loved one who has AD. I did the exact same with my Dad but, thinking back on it now, I can see that the reaction was just my own fears about what was happening to Dad. It actually took me a while to learn that dementia sufferers respond better to soft, soothing tones than angry ones. We're all on a steep and changing learning curve here so don't be too hard on yourself.
     
  11. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Hi Pinky80, thank you for responding to my post. It does sound like we have similar things in common. It's nice to be able to laugh a little at things, if you don't you would crack up. I think it's endearing that your Mum writes the Dr's names on her hand, it's like they are really fighting hard against this horrible disease. It's kind of funny when they throw the phone at you but not so much when you have just walked in the door, still to take your coat off and don't know who the heck is on the line or what the conversation is about!

    Your Mum sounds lovely and I bet she is very proud of you. I know that my Mum appreciates mine and my husband's help, maybe one day she won't know who I am we are making the most of the time we have now. I don't think your post was in anyway negative, you sound very sensible and at least you face up to facts and the situation. It sad and frightening but we will all get through this.

    I really hope that your Mum will settle into her new home soon. I dread the day when Mum moves out of hers, you just want to keep them love and protect them, you want everyone else around them to be nice and empathetic of their dementia. It's not their fault that they've developed this awful illness. Do you mind me asking how long has your Mum had the disease? I think Mum started showing symptoms about 4 years ago. She was becoming a bit forgetful, kept storing bits of newspaper events in a handbag beside her chair (never took the handbag anywhere!) And would often walk into the room, pick up the TV remote and change the channel saying "What's this rubbish?" We'd shout out, "Hey, we were watching that!" My poor Dad, could never watch the TV in peace!

    I too feel bad about getting short with my Mum. I don't mean to but it wears at your patience. I have just read an amazing book "Elizabeth is missing" it made me smile and made me cry a little but I could really identify with the characters, and it made me think that I must really try harder to be more patient with my Mum. It made me love her more too!

    Thanks again, it's really nice to hear from friendly people. I hope you will keep posting too.
     
  12. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    That's very true, Irishmanc and it is hard to be patient all the time. We are all trying our best and that is the best we can do. Its true that my Mum feels more safe around me because I speak softly to her, she gets confused by those with harsher tones, it's like they can't process their speech (and rightly so, who likes angry voices anyway!)
     
  13. pinky80

    pinky80 Registered User

    Feb 10, 2015
    9
    Hello

    My mum is 67 and was officially diagnosed around 3-4 years ago (I cant remember now, my brain is fried too) but even years before she was forgetful and it took a while to get her to go to the memory clinic so I think shes probably had AD for around 6 years.

    Ill keep my eyes open for that book.

    Have you had the constant phone calls or wandring episodes yet?
     
  14. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
     
  15. pinky80

    pinky80 Registered User

    Feb 10, 2015
    9
    We are in such a similar position. I am 99% of the time stressed, worried, forgetful, rattled, wound up and sometimes rude to the other people around me who I love and am struggling to keep normal relationships with. I dont mean to be rude, but Im just so tired all the time, I can not relax at all. On the one day I dont see mum, I check my phone every 2 minutes and cant let my mind think of anything else. I dont allow any time for myself or my partner anymore. This for me recently has been highlighted as I feel my life is now taking a different path which I think will end in me being mums full time carer, which i will do but I fear whats to come for me personally and after she is no longer around.

    I get the calls without a hello now, mostly she puts the phone down on me too when I have been reminding her of things, she gets upset and will put the phone down then call continually to apologse in tears.

    Its a very hard time for us and all involved, I do wish someone would invent a miracle pill !
     
  16. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    I know, it's really hard, Pinky80. I am lucky that I still have Mum and she still knows me. But it's the up and down ness of this situation that is wearing me out. It's really hard to find a balance, I'm trying to divde my time between my husband and my Mum fairly. She panics when she hasn't seen me for 2 days, I usually see her about 5 days a week but phone every day. She does go out and do things with friends.

    It's really hard when you get sucked in, you feel so guilty when you're not spending time with your Mum but you need to have a break too. You need to live, that's important. We're going away soon, for a week. In that time, I'm going to ask if a district nurse can pop in and just have a chat with Mum, make sure she's ok. And make sure that she has a fairly full timetable. But I feel so whacked out that I'm forgetting lots of things and I can't remember what I'm talking about. Is it worth you getting in touch with an Admiral nurse? Some one mentioned it last week, I'm going to investigate to see if we would benefit from it.

    And yes, I wish they would hurry up and come up with a miracle pill!
     
  17. Daisychain35

    Daisychain35 Registered User

    Mar 20, 2015
    1
    Hi,

    I too am new to this forum. My mum has also recently been diagnosed with Alzheimer's she is 77 and although it's taken this long to get a diagnosis we have known for a long time that things weren't quite right. Even so I feel like my world has fallen apart hearing the diagnosis felt so final and I feel like there's no hope. Doctors have started her on medication but haven't mentioned anything about which stage they think she's at. She has only been taking the Donezepil for over a month and has recently had it increased to the higher dose. We haven't noticed any positive difference as yet. If anything we feel like she has become more depressed and moody and her short term memory seems to have taken a decline. She constantly repeats herself and often forgets what she's eaten 10 minutes before.

    I am the youngest of four and am thankful that we all have each other. My husband and I live with my mum and are fortunate that there are enough of us in the family to make sure she always has someone with her. My middle sister comes everyday when we are at work to help my mum have a shower and just to get her out everyday. She's still able to do bits and bobs around the house but has had lots of falls and broken bones so we are all naturally very cautious of this happening again. She is very up and down and has not mentioned the diagnosis since it was given. My mum has always been of the mind set what she doesn't know won't hurt her and she was very cross with us for taking her to the doctors and memory clinic and also hated all the "silly questions" they asked her. We are unsure whether she genuinely doesn't remember what she's been told or if she's just blocked it out because she doesn't want to think about it. She gets very down and frustrated with herself and often talks about being a burden but has never said out loud that she has Alzheimer's.

    I worry everyday for the future and cry most days with the fear of watching my wonderful mum disappearing before our eyes. She has lost interest in most things and finds it difficult to concentrate on anything. She loves her grandchildren and they keep her entertained but even they seem to annoy her over the last week or so. As a family we are very close and want to look after her and keep her safe. Our dad died suddenly when we were all very young and my mum raised us alone and I think she did a wonderful job with very little money or emotional support. She often talks of my dad and always has done I was only 5 when he died 30 years ago and she has always made me feel like I knew him better because of the way she kept his memory alive.

    It is a bitter sweet time for me in particular as I am expecting my first child and although we are over the moon with the prospect of this wonderful new chapter in our lives I am finding it hard to make plans and think happy thoughts when I'm so worried about my mum. I feel so sad that she might not be able to have the relationship with my child that she was able to have with her other grandchildren. My biggest fear was that she wouldn't remember I was even pregnant but she does. Now my fear is that this big change in our lives could effect her negatively. I pray everyday that this baby might be the best thing ever for her and give her something to look forward to everyday.

    I just worry how I'll cope with a new born baby and my mum if this illness takes hold of her faster than we thought. It's such a sad situation for so many families and even though it effects so many people I haven't yet spoken to anyone who is going through it. Friends offer their support and kind words but I always feel frustrated that they really don't understand what it's like to live with this everyday.

    I am glad to have found a place to share my thoughts and feelings and hope this might help me to find a more positive outlook for the times ahead.

    My thoughts are with all those people caring for loved ones going through this. Xx
     
  18. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Hello Daisychain what a lovely name :) I, myself try not to look to far into the future and take things day by day. My husband got diagnosed 4, nearly 5 years ago. After the initial huge shock we talked about it all and sorted all the things we needed too and now just enjoy each day. There are good ones and not so good ones but I learnt to adapt and re adapt :) This dementia journey we are on is like a roller coaster of emotions and I try and makes the best I can out of this ride xx


    Sent from my iPhone using Talking Point
     
  19. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Can't really offer any advice but love your title She's my mum etc. I do think there are definitely good days and bad days, hang onto the good ones. My lovely mum is now late stages, she seemed to bypass middle stages. I love and miss her so much but still enjoy my visits to the nursing home however painful. Hang on in there x
     
  20. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    #20 flowerpetals, Mar 22, 2015
    Last edited: Mar 22, 2015
    Hi Daisychain,

    I'm really glad that you wrote, it's nice to be able to share things with each other. Sometimes I feel that I'm being selfish, that I'm moaning about nothing in comparison to what other people are going through but the reality is that somedays I feel like I'm just not coping very well with Mum's situation.

    There are good days and there are bad days. I think we have to hang on to those good days and remind ourselves that our Mums still love us no matter what. I really recommend reading Elizabeth Is Missing by Elizabeth Hayes. (That's the last time I'll mention it, lol.) But it makes me think of Mum and I. I feel bad about mentioning the negative days, it's like I am betraying her. It's such a hard, hard situation to be in. And I really want to be as positive as possible.

    I don't know what the answes are, I wish I did know. Leedslass and Chick1962 have both said to take one day at a time, not too look too far into the future, I think that's good advice. I wish you well with the arrival of your baby. Just take it easy, be kind to yourself, you will need all your strength. I'm sure your Mum will be delighted to be a grandmother again and enjoy the time together that you still have right now. You will get through this, I'm sure, there is a lot of love around you. xx

    Thank you LeedsLass and Chick1962 for replying
     

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