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    Originally posted by Mary C View Post
    My dietician was concerned about my weight loss and arranged lots of free samples of supplement drinks.Some need mixing with milk and others with water.I have to say I really don’t like any so far!I try and keep calories up but it’s hard with no appetite
    Mary
    Hi Mary, I used to put ice cream in mine and mix in the blender it added a bit of flavour and bumped the calories up 👍
    Janette x

    Comment


      stephen has some high calorie mousse its very nice. choclate, caramel and vanilla. i mix it with ice cream and try and get him to eat it. not doing my diet any good at all. its really nice. i wish it wasn't very nice.
      when i can think of something profound i will update this.

      Comment


        Originally posted by Ellie View Post
        Positive vibes If your dad would take a Complan, no harm in suggesting it - if he thinks of it as a drink for 'old, sick people', sell it as a milkshake!

        Chase up the Dietitian if he hasn't heard soon. (sorry for adding another item to your long list!!) xx
        Good idea Ellie. I am going to pop out to the shop later to see what flavours I might be able to tempt him with....
        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

        Comment


          Originally posted by Mary C View Post
          My dietician was concerned about my weight loss and arranged lots of free samples of supplement drinks.Some need mixing with milk and others with water.I have to say I really don’t like any so far!I try and keep calories up but it’s hard with no appetite
          Mary
          Thank you Mary C. I didn't realise they would do that, definitely need to chase up the dietician now, I will still try him with a complan - chocolate would probably tempt him most. I did buy him some more chocolate yesterday & he's already eaten that....
          Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

          Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

          Comment


            Originally posted by Nettie View Post

            Hi Mary, I used to put ice cream in mine and mix in the blender it added a bit of flavour and bumped the calories up 👍
            Hi Nettie

            I will pinch that idea... mmmm... ice cream....
            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

            Comment


              Originally posted by denise View Post
              stephen has some high calorie mousse its very nice. choclate, caramel and vanilla. i mix it with ice cream and try and get him to eat it. not doing my diet any good at all. its really nice. i wish it wasn't very nice.
              Doh! I just remembered he is lactose intolerant and can get stomach ache.... doesn't stop him eating chocolate! But certain things that are rich in dairy e.g. cream (he uses lacto-free on his strawbs) or strong cheese are the worst culprits.... I think I will look for vegan substitutes so he can still get the calories and the creamy texture... Come to think of it, not sure we told the nurses about that either.... (drags out notebook and adds to ever-growing list)....
              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

              Comment


                In other news, had a bit of a garbled phone call from Mum around 9pm. After feeling she had a better day, memory-wise, I felt down about it. She couldn't remember why we had bought some of the stuff yesterday, and what it was for....
                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                Comment


                  Positive vibes You can get some very good dairy free ice cream from Tesco's (Also available an other stores) also look at the Oatly products.

                  Richard
                  Richard

                  Comment


                    Phew. Lots more visitors for Dad, and we are all exhausted, even though its been lovely for him to see so many of the folks he missed in lockdown.

                    Sadly, had a 2 hour assessment with Mum, and dementia confirmed (I cheekily asked the consultant if he thought it was, not expecting him to tell us, but he did). We now have a 3 week wait whilst they determine which type. The main ones are Alzheimer's, Vascular, or a mix of both. Not what we really wanted to hear but I was kind of expecting it, being with Mum more than anyone else (apart from Dad of course).

                    Still taking it in.... however Mum, bless her, has already forgotten all about it and seems quite happy today, after being really annoyed with me on the consultation because I told him (the mental health assessor) my observations. Some of which she tried to deny had happened. I think she'd forgotten.

                    She absent-mindedly produced 2 bags with the blood forms inside which the MND nurses left (for Dad's monthly blood tests - liver function) to show the latest visitors, for some reason. However, Dad told me the lady who took his blood had also taken all the bags (or so he assumed, not being able to find them anywhere)! Argh... So I had already rang the nurses and asked for more. Mum had done her usual of putting things away 'in a safe place' and forgotten about them. Never mind. We will let nurses know.

                    Unfortunately, this is part and parcel of dementia - hiding things or putting things away and forgetting where they are. I am wondering what the heck to do about this, as, obviously, the blood test info/bags are important for each time Dad's blood is taken for testing. Trying not to think of worse case scenario situations that are popping in my brain.... (shudder).

                    The sad thing is she didn't even remember Dad was looking for them.

                    Dad seems reasonably stable on his meds, however, he is noticing his legs feeling weaker. He said he drove to fetch his paper, rather than walking, but he still took the dog out for an afternoon walk. He had a coughing fit at the dinner table (water going down the wrong way), so I again said to him to try something thicker i.e. Complan so its not as thin a texture and more a milkshake. He is finally going to try the chocolate one (has to be that!)...

                    The hot water dispenser is a big success for him, and he is happily making his own hot drinks with it, all day long. However, Mum won't use it and still insists on using the kettle for her own hot water. I am not sure if she is struggling to adapt to this, or, thinks she is helping Dad by not using it. I feel it kind of defeats the object as I was hoping it was a safer option for her too... best laid plans and all that.

                    Light at the end of the tunnel, the renovations and repairs are done, one tiny snag to do, carpets and bed ordered, moved dining table back to dining area after carpet cleaned, and finally brought back all the dining chairs for them (stored them until it was sorted at my place).

                    Got their other armchair put back together, after a slight technical hitch - Mum forgot the bottom support for the seat cushion. We eventually found where she had put it, and just got it set up when the visitors arrived, to be treated to the sight of my backside scrabbling around over the chair to put the support in... ha!

                    Cannot wait for it all to be done and all the stuff back, so the chaos that has reigned for months is over...

                    And yes, woke up to the dulcet tones of a retching dog. Again. A trip to the vets in on the cards....
                    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                    Comment


                      You can get thickeners to thicken thin liquid drinks. It's available in pharmacies, but also on prescription.

                      If your dad tucks his chin in when swallowing, that should make swallowing easier and, as he now needs to concentrate whilst swallowing, keep the chatting until after the meal/drink.

                      His SLT should assess him regularly.

                      Hope it's nothing serious with the dog. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        Hello Ellie

                        Thank you for that - we are on referral, but, apart from the MND nurses, and a call from physio (who unreferred us as Dad having 8 sessions at LOROS with another physio first), and nurse who came to take his blood (not all of it!), we haven't had contact from dietician, OT or speech/language therapist yet.

                        I will remind both parents about him eating and not talking to us at the same time - I think that's an important tip thank you. I do recall nurse saying to tuck his chin in a little to help with the swallow, even though it sounds contradictory, but I will remind him again, as that is important too. Do not want him swallowing water down the wrong way again. Worries me when he starts coughing and can't seem to calm it down for a while.

                        Think I will add thickener to the list, as I am not sure when the dietician can come (I have left a phone message for MND nurses about his problem swallowing now, & that Mum had misplaced forms). Also contacted dementia charity about Mum's confirmed diagnosis.

                        New thing he told us (don't read if eating breakfast):

                        Build up of mucus at the back of his throat, to the extent it is waking him up at night, and difficulty during day (feeling the urge to cough but doesn't clear it) despite using a nasal spray to help thin or get rid of it. Having to pop over there now and pick up some shopping for them on the way....

                        P.S. The rascally hound has been caught red-handed (red-pawed?) eating the bird food pellets that the birds have left over - so the sporadic vomiting has finally been narrowed down! Clue (avert eyes if sensitive) in the yellow vomit with yellow bits in it, the same hue as the bird pellets. Solution: birds are not having any more as they eat the sunflower seeds first, and the pellets a lot more slowly. On the plus side, having lost weight, she was nimble enough to climb on the table again! Argh..... She is still pestering to go back in the garden to finish off the pellets, not falling for that one....
                        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                        Comment


                          Stephen has been told not to eat and drink at the same time and even though he has a good swallow food must be in small pieces. If he starts coughing it's good to cough and not to prevent it. I suppose when you think back, didn't we always get told off for talking at the table. Probably to stop us choking on our food. 🤔
                          when i can think of something profound i will update this.

                          Comment


                            Would your mum agree to, and manage to make a note each time she puts something away? A notebook for that purpose would be handy. That’s so long as she doesn’t squirrel that away, Lynne 😉😃 x
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              i tried the notebook with stephen. he would put things away and we wouldnt see them again. i suggested a note book but he never kept it uptodate mostly because he couldnt find it. then of course there would be the effort he would put into finding things. there was no method or reasoning for where he would look for things. gardening things in the basement and garage things in the garage. simple. you'd think so but he'd be in all the kitchen cupboards, my dining room cupboard, any drawers he would even think it could have been put in the bedroom cupboards. there was no reasoning with him. now he just doesn't bother with anything so its no longer a problem. saying that the rug has to be just so and when he started on me for putting the cups in the wrong place in the cupboard well.........
                              when i can think of something profound i will update this.

                              Comment


                                Originally posted by Positive vibes View Post
                                Build up of mucus at the back of his throat, to the extent it is waking him up at night, and difficulty during day (feeling the urge to cough but doesn't clear it) despite using a nasal spray to help thin or get rid of it.
                                Try to have him drink more water, ideally 2 litres per day, but that's often unrealistic for older folk and those with dysphagia but no feeding tube so, if you let him know that the more water he drinks, the better it is for his secretions.

                                Pineapple juice helps thin mucus, but may also cause thinning of saliva, so watch for that. Medicine wise, carbocisteine will thin mucus, making it easier to cough up. Some nasal sprays can exacerbate secretions, depending on their active ingredient, or steroid sprays can cause rebound symptoms.

                                Once again, your parents are so blessed to have you but, please do take time to look after yourself too!

                                Love Ellie.
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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