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Are we in Middle to later stages?

Discussion in 'Middle - later stages of dementia' started by Sweetsheep, Apr 14, 2017.

  1. Sweetsheep

    Sweetsheep Registered User

    Jan 12, 2017
    Hi TP

    I have noticed over the last 3 weeks that my MIL seems to have slipped into another "phase" of this illness?

    But her Mum passed away around the same time and so I am not sure if the grief is causing the change or if we are arriving at the next stage?

    I don't know if it's just me but her swallowing seems very animated and loud. It doesn't always happen but I am noticing it more now. I have started preparing softer evening meals because I have also noticed she eats more if its soft. Occasionally she coughs when drinking or eating.

    She has recently developed a cold with a cough but is refusing to go to the GP to check her chest. (We will be forcing her on Tuesday if she isnt better).

    Also she is getting very confused by who she is talking to on the phone and it takes me a while to work out who she spoke to.

    Also her daughter and sister seem to be melting into one person. With a funeral being arranged it is very challenging trying to figure out who she spoke to and what they needed from her (Her family cannot grasp how bad she is and still call and ask her to do things e.g. find pictures for order of service. I couldn't understand why her room got turned upside down until hours later...)

    And her speech is poor. She is getting a lot of words incorrect and her sentences are not making any sense. She is also adding in a lot of made up information and so the story loops are changing and no longer accurate. Her vocabulary is getting smaller and smaller.

    She also cannot tell the time, cannot use the phone, has stopped using a teaspoon when adding sugar to her tea (uses fingers) and struggles with a knife and fork. She struggles with the TV remote and has no concept of day, date or month. She also hardly ever eats!

    She also hardly seems to brush her teeth and personal hygiene is poor. Unfortunately she has her own private suite in our home and is on a different floor and so I can never quite get on top of her personal hygiene. Plus the fact that she absolutely will not allow me to step in anyway. (A whole other chat)

    She does however seems to have a bladder like a tank and doesn't need the toilet a lot. Even after drinking a considerable amount of tea. I do wonder how she holds it in and does this mean she may never be incontinent?

    I guess my question is if anyone knows what comes next? I particularly need to know from anyone if continuance is next?

    She has become incredibly frustrated but still seems to "hide" her AD from us. I get the sense that sometimes she forgets she lives with us because of it and still hides it. She is argumentative and snappy and very withdrawn from everything.

    Does it seem as if she is middle stages? 10 months ago she was living on her own and caring for her Mum. This seems like an incredibly steep decline in under a year? Or is it just me being paranoid? She was 65 when she first got diagnosed but looking back she probably was ill longer. She is now 69.

    I just get this uneasy feeling that things are getting bad and really quickly?
  2. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    It does seem like a steep decline, but not overly so, in a year. If she has a cold, that could be having an impact, and she may have an infection. Any infection can have quite a dramatic affect on dementia. Adding a lot of "made up information" to stories is called confabulation. Our mind does not like finding that there are things missing from our memories, so it will just either fill the gap with something completely made up, or it will pull a completely unrelated memory from somewhere else and slot it in to the story. My husband was doing that for years, long before his dementia was diagnosed! It used to drive me nuts, because I didn't know why he was telling fibs, and telling elaborate stories that I knew were not true!

    If your MIL is starting to cough when eating, this could be a sign that she is starting to choke, so definitely, for the moment, go with softer foods. But she really does need to be assessed, so could you contact her doctor, explain what's been happening, and maybe he/she could call her in for a check? My husband's Gp called him in for a check "for everyone over 70, because we want to make sure we keep you in such good health!" Other times, we made an appointment pretending it was for me, and I asked my husband if he would come with me, and the doctor had a quick look at my throat, listened to my chest, and then said to my husband "Seeing as you are here, I'll just take your blood pressure." and as he (slowly!) did, he chatted away to him, managing to get several test questions in, which gave him a good picture of how things were! Sadly, from reading on the forum, there don't seem to be too many doctors like him!

    ps. Also, is there a way you can contact the family and get them up to speed on how she is, and how confusing and distressing she is finding the phone queries, as she never knows who it is?
  3. Timeout

    Timeout Registered User

    Feb 10, 2012
    My mum was also diagnosed at 65 and like you I think she was showing signs before. At 69 she had to go into a care home though as all the family worked and there was no-one to give the constant supervision she needed.

    By this time she had started to wander out of her house dressed inappropriately for the weather, she too was unable to prepare food, drinks and look after herself. She would require us to remove dirty clothes and lay out fresh or she would never change her clothes. Her speech although clear was getting increasingly strange with 'word salad' thrown in here and there.

    Her mobility was fine although walking onto flooring with different colours was challenging as I think she thought she was stepping into a hole. She would hang on going through doorways etc. Her appetite was good and swallowing and eating was no problem at all.

    The problem we started to find was toileting. We would visit to find she'd fished faeces out of the loo and place them on the side in the bathroom or in the kitchen as she didnt know what to do with it. After 4 carer visits a day she was still struggling in between when she was on her own so we had no choice but to place her in care. She settled okay, a few upsetting days where she tried to escape but her short term memory was so bad at this point every day was a new day and she thought the home was her own house.

    She stayed continent with prompting and regular toileting for about another year but her health deteriorated and her behaviour became very aggressive. She insisted in staying in bed all day and she started to require being hand fed as she didnt recognise food. Her vocabulary started to get less and less and it made less and less sense. She did recognise us at that point. She had numerous falls and 'faints' averaging every month for a year she'd be taken to hospital but they found nothing medically wrong.

    After 4 years her mobility started to go as she was using her legs less and less so the care home said they couldnt manage her any more. We moved her to a nursing home and at the end of 2015 she became very unwell. She nearly died, her kidneys were failing but after fluids she perked up and was discharged back to the home.

    So in 2017, we are still here. Shes still with us aged 75. Cannot speak any sense at all, limited to <5 words that are recognisable. On a pureed diet, double incontinent and hoisted from bed to Kirton chair daily. Can only move her hands and arms. Slow, slow decline. Can laugh and smile, enjoys chocolate, can swallow and cough well. We think she may go on years like this.

    I think our story is typical of the general timeline although with dementia anything can happen. What you can be sure of is she will decline. Infections and illnesses will eventually take their toll and gradually your mums abilities will diminish. Like us, you realise when you look back what has changed, in the present it happens so slowly you dont often see it. Good luck to you and your mum, its an awful illness.
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    I don't think it matters what stage anybody is in. Not everybody gets all the signs, or they get them in a different order. My OH, for instance, couldn't use anything electronic, like phone, remote, radio etc from very early on. Yet others will still be making multiple phone calls home even in late stages.
    So don't sorry too much, just take each change of behaviour as it comes. When it heats too much for you and/or carers, then think about a care home.
  5. Sweetsheep

    Sweetsheep Registered User

    Jan 12, 2017
    Hi Timeout

    Thank you for your email. Yes I can see that this illness could possibly go on for a long time. However I sense she isn't faring well. She gets a lot of colds as her immune system seems seriously compromised and she has this thing about blowing her nose non stop. I am convinced it causes her to get nasal issues which then turns into illness. I suspect she may have a chest infection but she has been unwilling to go anywhere to sort it out. My husband has now taken next week off to trick her into going to the Dr.

    I am sorry to hear about your journey with your Mum. It is incredibly sad. To be honest I am really scared of the next stage.

    We essentially didn't expect any of this when she moved in 10 months ago. And we were pretty floored and shocked when she arrived. She had hidden so much of the illness away.

    My husband and I both work and when MIL initially moved in, it was just meant to be a house share type situation where we could keep an eye on her. However she now requires 24/7 care and we are not in the financial position to give up our jobs.

    We are looking at care home options as we are finding it incredibly difficult to balance work with caring. My husband is a sales rep and works away all week. I have become her main carer but also work (shift work) and so I juggle her care around my job. I am exhausted.

    I don't sleep. And she won't accept much help from me. It is a pretty stressful and difficult situation. I also suffer with severe anxiety And PTSD and in hindsite should never have taken this on.

    My health is slipping as fast as her health is slipping and I feel as if I am stuck. I cannot make any decisions as my husband and his sister need to decide what to do about her care needs. But it takes time and my anxiety gets worse with every phase she slips into. I just know I will not be able to cope with the incontinence as I am already having major issues with the personal care (all relating back to childhood trauma).

    It's a big mess and you are right. This is a terrible disease not just because we are living with it. But I have to watch it eat her away too.

    Thank you for responding. I really appreciate you telling me about your dementia journey.

    Hugs to you


    Sent from my SM-G930F using Talking Point mobile app
  6. Sweetsheep

    Sweetsheep Registered User

    Jan 12, 2017
    Hi LadyA

    Thank you so much for responding. Unfortunately my MIL is basically constantly with "cold" although I am starting to wonder if she has a nasal issue or allergies as she blows her nose constantly. To get her to a Dr about that has been a nightmare!

    This time it has however gone into a chest issue and my husband is going to trick her into the Dr on Tuesday. You were fortunate to have a good Dr. I wish ours were as Good!

    I think one of the main reasons she is petrified to go the Dr though is because she thinks they are going to figure out what's really going on with her.....as she has completely forgotten about the memory clinic visits and the fact that we are all aware that she has Alzheimer's. She is keeping it a secret from us too!

    Hubby will get a referral for the throat team too. I really do think her swallowing is becoming an issue. She just seems to make a very loud noise as if she is holding it in for a while and has a big gulp!

    My MIL hid this illness away from everyone for so long. She lived on her own in London miles away from my husband and his sister and we would only speak to her on the phone or see her on social occassions. It was only due to a crises that we arranged to move her in with us.

    She had been hostessing for what now seems like years! And it is very possible she has had this illness at least 7 years already. Because of this deep deception she has become incredibly crafty about everything.

    She still has her family bamboozled. And they honestly think my husband and I over exaggerate about how she is. In fact she is even worse when my husband is away....i seem to see her warts and all! It sounds a bit odd but I am fascinated to see how she will be at the funeral next week as she hasn't been in the same room with her whole family for at least a year. This might be the eye opening day for everyone?

    But I am sometimes amazed at what she can achieve or do when she is with someone else other than me or my husband. E.g. She doesn't know her pin number when we are with her. But we have recently discovered when she is with her companion she remembers it!

    (And we now have to trick her into handing her bank card over as she is suddenly going on crazy spending sprees when in the care of someone else).

    As for the confabultion....her latest thing when she gets words wrong is to say...

    That's what my Mum used to call it....

    Thank you so much for your message and sharing your journey with me. The support means a lot.



    Sent from my SM-G930F using Talking Point mobile app
  7. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    I'm assuming there's no POA in place? Might be difficult to get it, unless you explain how important it is for EVERYONE to have something in place should anything ever happen unexpectedly, and do POA for yourselves at the same time - because it actually is something everyone should have in place!
  8. Sweetsheep

    Sweetsheep Registered User

    Jan 12, 2017
    Hi LadyA

    Yes we have a POA in place. It is shared between hubby and his sister..although a waste of time as she is an invisible. Pretty ironic that I care for her but essentially have no say in major decisions.

    Sent from my SM-G930F using Talking Point mobile app
  9. Sweetsheep

    Sweetsheep Registered User

    Jan 12, 2017
    It's 5am and I am awake after just a few hours sleep. I only got in from work at 10 last night and late to bed. Hubby off work this week. I did joke and say he would be stark raving mad by Friday...well at least feel what it feels like for me when he is away. And last night he was almost growling when I got in, due to the new socks and tights loop we have found ourselves in with MIL. The funeral is on Friday and I honestly cannot wait for it to be over. The delay due to Easter has just created us to be dragging out MIL anxiety. And of course the outfit planning which has gone on for over 3 weeks now. And of course the issue with socks and tights.

    I have now bought her socks and tights. But nothing is making her happy. I am expecting a major meltdown on Friday! Last night while reading the So Bazaar thread everyone talks about I came across a convo regarding the issue of not being able to put the tights on. Perhaps this is what is making her so unhappy?

    Hubby took her to Dr yesterday and she is on antibiotics for possible chest infection. He did however lose his rag a bit with the GP after discovering that a letter had arrived at the practice 5 weeks ago from MIL old surgery and asking for a referral to the memory clinic. They have sat on it for 4 weeks!!!! An absolute disgrace. We do however now have a referral. But I just do not think there is any urgency from anyone! Hubby actually asked the GP if she had any experience with dementia and she said she had seen it in the community. He said no, do YOU have any experience of it. To which she replied no. And he said then you have no idea what you are doing. Why not let us see the same Dr who we don't have to keep repeating the same information over and over to. Also why no specialised unit at the GP? Which then spurred me on to writing to the practice manager. I will be drafting a letter on Thursday and sending a copy to the local paper to publish. The care of people in our town is appalling to say the least!

    It doesn't help that I am also seething with anger over the fact that my SIL came 300 miles to visit friends 15 min away from our home over the Easter weekend and never bothered to come and see her Mum!!! They even left early on Sunday (after we suggested lunch) to get home for the dog!!!!

    I lost my Mum 3 years ago and I just cannot get over this. In fact I am dreading going to the funeral on Friday as I fear I may do or say something which could cause an issue. And so I am getting very anxious about Friday....

    I myself am having a very bad week. Because I am not sleeping my state of mind is not in a great place. It doesn't help my anxiety one bit!

    I am incredibly angry to just about everyone atm. And getting MIL cold hasn't helped either...

    Right, I have 2 hours before I need to get up again for work. This shift is the pits. A late and then an early. But at least I am off for 2 days after. With hubby around this week I can hide in my room for a change!

    Now to try and nap!

    Have a lovely day!

    Sent from my SM-G930F using Talking Point mobile app
  10. Julia B

    Julia B Registered User

    Apr 13, 2015
    Hello, just wanted to say you are doing so well, and I'm worried about your health honey, this is such a hard road and you aren't putting yourself anywhere in this journey. Ring admiral nurses, they aren't in my area but oh how much they helped just by listening! Others on here, wonderful people, will give you better pointers, I just want to tell you I know how you feel and I'm sending you a huge hug xx
  11. Sweetsheep

    Sweetsheep Registered User

    Jan 12, 2017
    Hi Julia thank you so much for such a caring message. It meant so much to me. I haven't had a chance to reply to.any of your posts bit I think we are in a very similar type of situation. My husband and I are working on a medium to long term plan at the moment to get the situation sorted. But your support is so appreciated x thank you so much

    Sent from my SM-G930F using Talking Point mobile app
  12. Sweetsheep

    Sweetsheep Registered User

    Jan 12, 2017
    Well folks the situation just got weirder. I was incredibly anxious about the funeral yesterday. I guess in a way my biggest fear was everything seeming perfectly normal and then us looking like we just can't be arsed to look after her anymore. Her hostess skills have been so good in most cases that when we try and explain how it is living with her, I am sure people think we lie!

    Anyway back to the weird stuff. I had no need to worry. MIL let all the weird shone right through. At one point I realised she may just be drinking a tad too much because she was really odd. But I think she was just on a high to be seeing family and old friends. I was called to various conversations to answer her questions that she made as if she had casually forgotton. I think it became very evident to everyone that if she wasn't even able to speak about the town she lived in.....then she wasn't casually forgetting these details.

    But I had someone come up and ask me of she was back with her ex husband. I said no. She said oh....Mil just said she was here with him. I said nope. Definitely not. My FIL was in a relationship with someone and it definitely wasn't her. Not to mention he is in Scotland!

    Oh she said.....looking rather confused.

    My husband spent the afternoon incredibly confused trying to correct the information MIL was spreading around about him.

    But then things got really weird. And much to my husband's horror my MIL put her hand on his leg and very inappropriately touched him. He never said anything to me at the time. And it was only when we got home that he said what had happened. He was incredibly upset. I saw him cry for the first time about his Mum. It all made sense then. All the stories, all the confusion. She thought he was her husband all day!

    This is not a stage that I want to.go through. Things are so strained between her and I as it is. If she starts to think my husband is her husband we are in for a very difficult patch and I know for a fact that my husband will not tolerate this type of behaviour. Neither will I to be honest.

    The good thing to come out of yesterday though is that we seem to have received a unanimous blessing to consider a care home. It was our biggest worry. If everyone in the family agrees. It makes the decision so much easier. So now we need to start planning and looking into the beat place for her. Not sure she will be at all happy. But I think we are heading for some difficult times and it's time to put the right plans in place.

    On the other plus we finally have a referral to the neurological team and after a complaint letter to the GP we are hoping to get a referral to the SALT team.

    minus 6 days to my operation and I am trying to get everything done before I am out of action for 4 weeks. But looking forward to a break. Even if it involves a little bit of pain!

    Sent from my SM-G930F using Talking Point mobile app
  13. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    Ann Mac on her so bizarre thread details about her MIL thinking her OH (MIL's son) is her husband. It is a long thread, so it will take a bit of reading to find it.

    Hope the op goes well, and that you can get plans into place for MIL.

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