So happy-sad to be here.

Discussion in 'I care for a person with dementia' started by Margee, Jun 2, 2015.

  1. Margee

    Margee Registered User

    Jun 2, 2015
    #1 Margee, Jun 2, 2015
    Last edited: Jun 2, 2015
    Hello everyone. I have spent the last 5 days on this site reading everything I could read on this horrible disease, dementia. My heart bled for every post I read because I can relate to what you are all going through with your loved ones.

    I started full time, 3 years ago looking after my dear MIL who was diagnosed with mild dementia. We've had a few things that have set us back but for the most part, managed very well at my home. Then.... the last four months happened. A UTI and cellulitis landed her in the hospital and she has never been the same. She is dying now.

    Before this set back, she was still walking around the house with a walker for exercise, had a complete schedule during the day and all that is gone now. The ups and downs you all seem to be so familiar with. I know I don't have to explain. One day I think she will not make it through the day and the next blows me right out the door. She will want water and a few bits of food. She will sit up for an hour (every couple of days) and then want to go back to bed. I may not be able to get her up for another 2 days because she is soooooo weak. I do everything you guys do. I have powered greens in her cranberry juice, the best nutritious vitamin drinks...I even use coconut oil to hopefully 'smooth' out her brain a little. I feel so defeated because I actually thought I could make her better after the 4 week stay in the hospital.

    Tonight, my husband and I are sure there is cellulitis on her ankle again. I drew a pen mark around it. We have all decided that she will not have anymore hospital visits and the doctor has 'the plan' that I dread more than anything if infection starts again. We are not going to allow her to suffer anymore.

    My husband took time off of work to help me because I simply can't do it alone anymore. We are so tired because she calls for water every night and I thought they lost the desire for water in the end? We get up and she only wants little sips and then she calls for more after we get back in bed. She seems to be constantly thirsty? Please forgive me for letting this all out right now. We have cried together at least once a day and our nerves are 'shot'. It causes sooo much confusion.

    She still seems to recognize my husband and I ...although she has started to call me 'nurse'. Some mornings she really fights me now while changing her diapers. She doesn't know day from night and is now sleeping 20 -24 hours a day. Tonight we had no other choice but to get her up so we could change her bed. She sat and drank 2 cups of tea and had a little bite of toast. It totally surprized me? She was smiling and seemed alert.

    I will talk to the doctor tomorrow because there has been no bowel movement for 6 days and I am worried. We want so much for her to have a peaceful death. (although, I must admit, I'm getting a bit scared to find her 'gone')

    I do have palliative care coming in 2 days a week now and we are waiting for a hospital bed which will make all of this this a little easier. She has become dead weight.

    She is the most precious woman....still will look up and tell you that she's feeling just fine. She's amazing and doesn't even know she's dying. She still whispers 'thank you' to everything we do for her. She is so weak. I know this is a waiting period and we'll just go day by day.

    Thank you for reading this very long post. I just needed to talk to people who would understand how frustrating and mind boggling this disease is. Again...thank you. And bless you all who have loved ones who have this terrible disease. I wish you all much peace tonight.

    Sincerely, Margee
  2. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    Ontario canada
    Hello and welcome to TP. I know it is late in the UK, but I am in Canada and a few hours behind. Just wanted to let you know I am thinking of you. Take care. You sound like an amazing caregiver with an amazing MIL. Keep posting, I'm sure you will have lots of support on the forum.
  3. Margee

    Margee Registered User

    Jun 2, 2015
    Thank you so much Carol for the reply. I am also a Canadian......East coast!

  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Margee

    You are giving your MiL such loving care, it`s really moving to read your post.
  5. beverrino

    beverrino Registered User

    Jan 12, 2015
    Margee - reading this has made me cry. You sound a wonderful person and it is so sad that this horrible disease is out there. You sound so very caring and have done everything you can for your MIL. I hope she keeps comfortable and you all find peace when the time is right. Hugs to you all - take care xx
  6. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    Buffalo, NY, USA
    How's it going?

    Margee, just reading your thread and wondering how you are doing. I'm in Buffalo, NY, right near the Canadian border so I'm sending you closeish good thoughts!
  7. Il Gufo

    Il Gufo Registered User

    Feb 27, 2013
    Just sending you a hug and all good wishes Margee. I lost my very special Mum in January, and only returned to this forum yesterday as couldn't bear to even see the word 'dementia'. Had already forgotten how incredibly difficult life is looking after a loved one with this vile disease. (Think it must be a way your mind copes with it, a bit like how you forget the pain of childbirth)? You will find new friends and much support here.Oh, and my daughter in law is Canadian and we love her to bits :) xx
  8. Margee

    Margee Registered User

    Jun 2, 2015
    #8 Margee, Jun 3, 2015
    Last edited: Jun 3, 2015
    Thank you all so much for the welcome. I appreciate it so much. It doesn't matter where we live, does it....dementia is dementia? We may live around the corner from each other or right across the street....people are all the same across the globe. We humans share all the trials of life in the same way. I'm always so happy that I was born in the time of the be able to have friends from all over the world sharing the same problems. We are so lucky in this way.

    This morning as I sat my dear Mil up because she was crying out for water I asked myself the question as to why I was frantically trying to save her through giving her as much nutrition as I could through the drinks I am feeding her? One person will say it's inhuman at this point and another will say keep doing what you're doing. I'm so confused. I'm trying to keep all infections away from her and I feel that the vitamins and extra protein powder is helping. But she is sooooo weak???? I do feel that if I stopped all the 'nutrition' that I was adding to all her 'fluid' food that she would 'go' a lot faster.

    So am I trying to play 'god'? I am not a believer that 'god' has this certain time when he finally calls people 'home'. Faith was stolen from me many years ago. That doesn't make me bad....I am a very soft-hearted person who can't stand to see anyone; human or animal suffer. I can't watch the news anymore or any movies about suffering. I was diagnosed with complex-PTSD because I've had too many deaths happen in too short a time. I know about death. I was completely traumatized when my only sister (who was 11 months younger than me) dropped dead from a brain aneurism 19 years ago. It took me many years to be able to even face real life again.

    So why am I doing what I'm doing to my MIL by feeding her all this nutrition? Am I trying to not have to face the inevitable again? What is the right course of action? You're dammed if you do and damned if you don't. I'm so tired of all this today. I'm waiting for a hospital bed. It could take another 2 weeks. My back is killing me. I know this sounds so selfish because it 'all about me' right now but I'd like to know...did any of you try to keep them alive by doing everything in your power? When is it time to give up?

    Thank you so much for listening to my rant this morning.

    A huge ((hug)) to all who are suffering today.
  9. Alison20

    Alison20 Registered User

    Jun 3, 2015
    Your blog was so moving

    I was so moved by your blog, I can understand exactly how you and your husband are feeling.

    My father and I are looking after my mother at the moment who has had Alzheimer's for the past 5 years. We have been SO lucky because she has been quite stable but has recently had problems with her chest and episodes of breathlessness and it has definitely affected her dementia. She hasn't been doing anything around the home for a couple of years now and would have no idea how to but Dad and I look after her and she is happy. The biggest problem we have is that we have got to the stage now where we cannot get her out of bed and it is often half way through the afternoon before we get her into the bathroom. She doesn't want to go out anymore - she loved nothing more than going to the shops and worked full time until she was nearly 70 - and spends her day either in bed of sat in her chair. It is heartbreaking.

    I've recently stopped working for a while, naively thinking that I would be able to look after her full time, but it has quickly become apparent that for her sake and for Dad and mine, we are going to need more help. I therefore had a care agency come in yesterday with a view to having a carer come in to help get her up and washed and dressed but I feel SO guilty. I really wanted to do this for her myself and feel as if I have let her down. I just so admire you because you have been looking after your MIL for 3 years - you are amazing and you must hold on to that at the moment.

    I just wanted you to know that my thoughts are with you. Keep strong!

  10. susy

    susy Registered User

    Jul 29, 2013
    North East
    Mather welcome here. Glad you have joined us. Don't feel bad about feeding her nutritious drinks or water. She will pass when she is ready to and not before. If she is thirsty she needs to drink. If she likes the nutritious vitamin drinks then that's great. She hasn't reached the point yet where her body is telling her she has had enough yet and neither has her mind. The two things are just as powerful. Personally Id say keep going with this until she refuses.
    I don't know if you have any help overnight but during the night if she would tolerate it a subcutaneous drip may ward off the thirst she gets and allow a nights sleep.
    All the very best xxxx
  11. Bramble68

    Bramble68 Registered User

    May 11, 2013
    Hello margee

    I read a lot on here but rarely post, but had to thank you for all you wrote. I can only echo others' comments on how you and your husband are caring for your MiL, your words are very moving, and I'm sure we can all relate to them. I agree that whilst she shows she's thirsty and accepts what you give, then leave things as they are.

    We're still in the early/middle stage of our journey with my mum's illness - she still lives by herself, does some shopping in the village alone, and knows who most of us are, BUT she IS changing, and has changed noticeably from the woman she was only 3 years ago.

    This disease robs us all of time and family, and, although I'm normally a generous, calm person, I occasionally wish for people in power to have a taste of how things are for so many - if only to bring home to them the stark bleakness that blights lives at times, so that it might kick-start them into providing more funding for research, giving true help to families and listening to our experiences to improve things for everyone.

    Hugs to you and your husband, margee, glad that you have each other to lean on x
  12. Margee

    Margee Registered User

    Jun 2, 2015
    #12 Margee, Jun 4, 2015
    Last edited: Jun 4, 2015
    You guys are wonderful! Thank you so much for the encouragement. I appreciate every comment you left me.

    I think (if you don't mind) I'd love to post on this thread from every few days, so that it may help someone else out. I am learning more and more everyday through reading forums like this and just through plain ole' 'hand's on experience with this disease. You can walk right out of their rooms and go back in 5 minutes later and there's another 'surprize' of a slide waiting to hit you in the face. My MIL was walking just fine 4 months ago and then because of a UTI ending up in the hospital and has never walked again? Just. like. That. Gone. The ability to walk. Gone.

    Then something happens and they are almost their old selves again? They eat and drink and you think their not as bad. Yesterday, you think their going to die and today they may want to watch the television?

    People need to become so aware of the 'head-spin' of this disease. You can't seem to see the next 'slide' happening. One minute they are eating and drinking and the next they start to not be able to swallow. I'm on alert for that one now. A good chance that it will be the next 'slide' but at least I'm prepared. I wasn't a few months ago. Nobody ever explained the disease to me until I was immersed in it. I just thought she would lose her memory and fall asleep and die. Simple. Peaceful. I did not know it would steal everyone of her faculties in the process. I did not know that this disease was a full mind-body disease. I feel stupid saying that. How stupid was I to think it was just about her losing her memory??? I thought I was half smart?

    When my best friends mother sat for 10 years in a nursing home staring out a window, I just thought she lost her memory. And she did. She forgot how to stand, how to eat, how to go to the bathroom, how to hold her head up..... how to......!!! I didn't 'think' with my own head that when your memory goes or start to decline, you lose the ability to remember how to do anything!!

    Wow. What a journey. The long goodbye. Yesterday, I told the doctor I didn't know if I could make the 'last lap' but today I am feeling a bit better and an VERY lucky to have a hospital bed being delivered so that it will make things a lot easier. I'm going to hang in there and see if I can do this. We woman (and men) do not give up easily as much as we want to some days. I always said that nurses are 'live angels'. Now I truly know that to be a fact. We have all turned into 'nurses' and we can be proud to say that we helped our loved ones, the best way we could to give them a peaceful, 'last of their journey on earth' as we could. Care takers are angels. You guys are angels.

    Thanks for letting me 'talk'. Let's try to remember to do something extra special for ourselves today. I'm going to eat a quart of chocolate ice-cream later. Screw the diet............Lol

    Big hugs to you all
  13. Alison20

    Alison20 Registered User

    Jun 3, 2015
    hope you enjoyed, Margee!!

    Your post just made me laugh - I really hope you enjoyed your ice cream - you really deserve it!! What a good idea we must all try to do just 1 tiny thing for ourselves each day and list it!

    My Mum's carer started for the first time today - I was DREADING it. I really thought I could do it myself but she has become a nightmare to get up out of bed and really would stay there all day. I nearly cancelled because I felt so guilty having somebody come in to help but at 12.30 this "angel" arrived who I instantly knew Mum would like. Within 10 minutes they were singing "you are my sunshine"! She was downstairs for her lunch before 2pm which is a miracle and I am so happy. I know tomorrow may be totally different but I've got the first day over which is something.

    My mum's walking has got worse since she has had problems with her chest/cough and she is just becoming more and more breathless. I must drive her insane because every 5 minutes I'm asking her "are you OK".

    Please let's keep posting on this thread because you are helping me!

    Hope you sleep well!


Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.