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Me, My Father and The Alzheimer's

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  • #46
    Just read through your journal. I'm so sorry that your dad has continued to decline, but it is pretty amazing to read about all you do for him. The decision to transition him to a facility must have been difficult. My mother was a geriatric nurse and used to say that the transitions for Alzheimer patients were always harder on the family than the patients. She said her Alzheimer patients were always the happiest patients she had, once they settled in. I hope this will be the case for your father as well.

    Take care and best of luck,
    Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

    http://www.krispin.com/lectin.html

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    • #47
      Yes, that's our thinking. He doesn't know who I am, other than that I'm the person who does everything. The house is no longer his home, just somewhere that's vaguely familiar and it doesn't really stop him getting anxious about where he is or what he should be doing. We feel that in a short time anywhere he stays will become equally familiar and it won't take long for him to forget I was ever around. Sad but true. We've done our best. Thank you for your supportive response.
      Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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      • #48
        Thankyou for the suggestions on how to approach my dad. I really appreciate it.

        I didn't mention yesterday how strong you are! I was too teary and brainstorming about my own dad after reading your amazing story!

        You have done a wonderful thing for your dad and you will never regret it. It is such a sad sad disease and you are very strong to have done all that you have so selflessly, and without falling apart!

        I wish you and your father all the best. Take care of yourself .

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        • #49
          Hmmm, after reading Mark's post on sprints, I decided to try it on the bicycle I have in the conservatory on a roller. Wow, just 4 x 20 secs sprints and I managed a 10 sec gap between the 1st 2 and then needed 15 and then 20 secs before the last one. and my legs were definitely wobbly, but it felt good. This is definitely something I can spare the few minutes for and fit into my day a few times a week to add to the body weight stuff I'm trying to do.

          Still IFing one meal a day and comfortable with it and gradually losing weight again. Not that I care about the weight so much but I can feel the difference in my clothes where I'm losing fat.
          Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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          • #50
            Hah, just looking back at my last entry back in January. What a difference a couple of months makes.

            The biggest change since then is my father's eating habits and this of course has a knock-on effect on my stress levels and my own eating/snacking habits. He's still deteriorating in a fairly random and uneven manner. Some days/weeks are worse than others. I thought we were heading for frequent incontinence, but that seems to have improved again. It's more worrying that he's just not eating as much, especially at dinner, which is about the only time I can get some meat into him. Whereas he used to average eating about half of what I dished up, he's now regularly eating only a few (half a dozen or so) mouthfuls and then looking terribly put-upon as if, by putting a full plate in front of him, I'm asking him to do something distasteful and entirely unfair. Some days he's eating just one forkful of egg or potato and giving up.

            I've reverted to mashing the potatoes with cream and butter (from frying in coconut oil), to try and get more calories in with an easier texture. Some days he ignores them and eats a bit of egg and since he goes for the yolk first, that's not a bad thing. Some days he'll try a few peas or baked beans and some days he won't touch them.

            I've had to give up cooking bacon and egg for breakfast as he ended up not even touching it. I've changed to giving him a decent sized bowl of chopped fruit with milk as he seems to know (mostly) what to do with a spoon. Mixing in cream with the milk to up the calories. Thankfully he's still happy to nibble on cheese all day and to eat his banana for lunch so he's not entirely starving. But the dinner thing is both worrying and frustrating. I know it's not that he's full as he'll always polish off fruit and cream if I offer it and full fat dairy and fruit as a basis, isn't the worst diet in the world, so it's just that he doesn't seem to be eating a lot.

            He once told me that he never gets hungry and he just eats because he knows he should, so I have some idea of what's going on. If he doesn't fancy something, he's just not hungry and of course he's incapable of telling me what he'd like to eat, so I have to just offer him various options and see what he'll eat. Options limited by his ability to chew and his recent dislike of hard/crunchy textures. But then, his lack of interest in mashed potato doesn't bode well for his taking to anything puréed either. He objected to ice cream because it was cold and chocolate now seems to be confusing him.

            It's harder to communicate with him and he has fewer days when he listens to, let alone understands what I'm saying. So the frustration has been building and I've resorted to snacking myself, even if the snacks are at least semi-primal. Almond butter, coconut, veggie crisps, dark chocolate. My biggest problem has been alcohol. Not that I'm having any more than a daily pint, but it's not helping, so I've managed to stop that the last couple of days. I haven't managed to keep any kind of regular exercise going, not even the sprints, which is daft as they only take a few minutes.

            Hopefully things are now moving on the care home front. I'm currently organising a couple of weekly home visits and I'm waiting on a call from the main home we want to get him into. Once things start moving there I would hope we're looking at a couple of months, but I won't know until I get that call - which was supposedly coming last week.

            And of course, once he's being looked after elsewhere, he'll be back on a standard british diet with wheat products and high sugar. To be honest, now that he's reaching the point where his quality of life is dropping below his awareness, I won't be too upset if the diet causes a more rapid failure in his health. We've given him at least an extra year of increased health and awareness which, on a projected 3yr average lifespan, given his age at diagnosis, is no mean feat. As well as a general improvement in cognitive ability, he stopped complaining about his legs, had majorly reduced symptoms of haemarrhoids, excellent blood pressure and lipid levels and generally good health. He'll be 94 in 2 weeks time.
            Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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            • #51
              94 in 2 weeks, an early Happy Birthday to your Dad! His stand by food at this point is cheese and banana... That doesn't sound too far off from the standard diet I ate when I was in my college days. Cheese slices were cheap back then and bananas even cheaper. A grand day was when I could spend a few cents more on a microwavable pot pie.

              Best wishes to you and your dad as you continue to manage his health with your loving devotion and of course your own health!
              Follow my progress at ->Journal: My Body Revival



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              • #52
                Hi,
                Thanks for writing this journal. I took care of my mother for 10 years with alzheimers. She got the early form, started symptoms around 50 and passed on at 60. I don't regret a minute that I spent caring for her, as I'm sure you don't your father. But it is so stressful, making these decisions for ones parent, of life and death even, eventually. I hope you're getting support from friends and family. You deserve to give yourself as much devotion as you give to your father. I hope that makes sense.
                Kathy

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                • #53
                  Originally posted by PRO199 View Post
                  94 in 2 weeks, an early Happy Birthday to your Dad! His stand by food at this point is cheese and banana... That doesn't sound too far off from the standard diet I ate when I was in my college days. Cheese slices were cheap back then and bananas even cheaper. A grand day was when I could spend a few cents more on a microwavable pot pie.

                  Best wishes to you and your dad as you continue to manage his health with your loving devotion and of course your own health!
                  Thanks! My standby at uni was tinned tuna, sweetcorn and rice - usually with salad cream/ketchup. Minimal cooking, nothing to go off.
                  Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                  • #54
                    Originally posted by incorky View Post
                    Hi,
                    Thanks for writing this journal. I took care of my mother for 10 years with alzheimers. She got the early form, started symptoms around 50 and passed on at 60. I don't regret a minute that I spent caring for her, as I'm sure you don't your father. But it is so stressful, making these decisions for ones parent, of life and death even, eventually. I hope you're getting support from friends and family. You deserve to give yourself as much devotion as you give to your father. I hope that makes sense.
                    Kathy
                    Cheers, Kathy. I felt it was important to talk about Alzheimer's and what it really means to have it and look after someone with it. But especially here at MDA, because of the change we noticed when we took wheat away. I think that Alzheimer's is something that tends to be ignored, as if it's rude to talk about it, but with so many people developing dementia, anything that makes a difference is worth trying. Personally it's given me the biggest incentive to stay clear of wheat products.

                    As for me, I figure it's my brother who's got the short end of the stick - he's the one handling the finances and the red tape including tax returns and probate etc. All I have to do is be a chauffeur/ butler/ valet for a few years.
                    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                    • #55
                      Today is my father's 94th Birthday. He hasn't a clue, of course. He's had a couple of cards and I bought him a larger (HO/00 1:72 scale) die-cast spitfire - Mk1 for those who care. He's got a number of smaller die-cast planes, but they're a bit fiddly and as the Spitfire is pretty much his favourite plane, I figured he should have one large enough to see properly. But of course 5 mins later he's not a clue it's his birthday or that he had a pressie or cards.

                      Today he had a sitter come and sit with him for 2 hrs while I got out and sorted my bike's annual MOT test. That will now be a regular thing and we will also have a 1hr visit on Fridays to see if we can manage a shower or other personal care activity.

                      As for food, well, the last week or so I've been giving him soup for dinner. Not home made, but the tinned type because one of his sticking points seems to be the texture of food and I figured if I know he'll eat Heinz tomato, then if I try other stuff I can always revert to the Heinz stuff. He's much happier to eat that than the mashed potato etc he used to eat.Today he's also had a half hot cross bun with butter as a treat and an experiment and he ate most of that, so at least I know that he will still eat bread stuff, even if it requires chewing. Had one bad day where he also just refused to open his mouth for the medication - capsule emptied onto a spoon with vit D or mct oil to make it easier to swallow and a neutral taste.

                      We're approaching the stage now where I'm going to have to worry less about what's in the food and just make sure I get sufficient calories into him. He has doesn't have much in the way of reserves - neither body fat nor muscle - and doesn't eat that much at any one time. Given his recent pickiness and small appetite it's a balance between convenience and availability which means leaning more towards processed foods with a longer shelf life.
                      Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                      • #56
                        Thanks so much for this meticulous, well-written documentation Awok677. Wishing you, your Dad and family all the best, and hope you soon will be able to take care of *you* as you deserve. Be at peace--

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                        • #57
                          Good news and bad. The bad is that his eating has been getting worse and we're back to just a mouthful or two of food before he's had enough. I took him to his GP before Easter because a pacemaker checkup had flagged episodes of atrial fibrillation and he was developing a nasty cough as well as my concerns about his lack of appetite. The cough turned out to be a chest infection which has responded to anti-biotics and the atrial fibrillation is a random event that's impossible to do anything for, but the GP assures me the reduced appetite is simply the next stage of Alzheimer's and it's a common development. We had a fortified supplement from the GP which at least gave me some reassurance and now I'm just trying to give him anything he'll eat and since he seems to be okay with biscuits (cookies) they're back on the menu. I have no idea if it's flavour or texture that he dislikes but even the lunchtime banana only gets a bite or two now.

                          The good news is that he has a place in a brand new purpose-built dementia wing at a Royal British Legion home not far away and will be moving there on May 20th, so my work here is coming to an end. We went to visit last week and the woman in charge of admissions took a liking to him and it's a lovely building - very open and ful of natural light. He seemed interested in looking around though he didn't have a clue why we were there, even though I explained it was a place where lots of people live who aren't very well and the Doctor suggested we should have a look. The ethos of the place seemed to match my own approach to looking after him - basically going with whatever he's comfortable with and not stressing about appearance if he isn't.

                          I explained our dietary adventures, but assured her that I didn't expect him to maintain a wheat-free diet and in fact would be happy if he was eating anything. We're hopeful that he'll find it easier to eat when it's a more social activity and she said they often find that people who won't normally eat will still open a packet of crisps if everyone else is doing the same. They at least have the resources to try him with different options to see what he fancies.

                          To be honest I think we're on a downwards slope now health-wise and anything that gives him pleasure is good, whatever the effects on his health. There is no 'long-term' any more, it's just one day after another and at some point either his heart/circulation will give out or his brain/the alzheimer's will cause a major system failure. At least he'll be properly looked after now, whatever he needs.
                          Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                          • #58
                            Well, my father has been in the home now for approaching 2 months and I don't seem to have stopped since then. The most important thing is that he seems to be happy and the staff at the home are excellent. They seem to have really taken to him and after a few days of anxious wandering, he seems to have settled in nicely. He doesn't really know where he is or what's going on, but since he also doesn't recall being anywhere else or with anyone else, he's not missing either me or his house. I've visited a few times now and he basically doesn't have a clue who I am or why I'm talking to him.

                            Leaving him there the first day was the hardest and one of the worst feelings I've experienced. He was quite anxious because he didn't know what was going on and I just wanted to put him back in the car and drive him home so that he'd be reassured and happy again. Since that wasn't an option I had to explain to him that I had to go out to work (a white lie) and because he couldn't be on his own, he was going to stay here where there were people to look after him. I felt like the biggest cad in the world, especially since he seemed to understand initially, but then just returned to a general state of anxiety.

                            However, now that he's settled he seems fine and he's eating okay (when they can get him to sit down) and he's even been playing his harmonica. Of course nothing goes smoothly and the week before he went, he managed to break off his one remaining front incisor and the bridge attached to it, leaving him with a gap like an 8 yr old. After discussions with his dentst we've left it since he seems to be able to eat okay and it doesn't seem to be bothering him.

                            And I've spent the last 2 months running around sorting out the house to go on the market and trying to find space to fit back into my own house. I'm doing a lot more moving round in general and I've had some very good days when I can feel the weight coming off, and some bad days when I can't resist the chocolate or veggie crisps and I can feel it going straight back on again. In general though I'm still within the 80% primal and I know I'm making strength gains. My lifting heavy things has included loading and unloading sofa sections and hurling them into the skips at the local dump and shifting several hundred books from house and roof to garage to car to bookstore.

                            Now we've got an offer on the house and the clear-out process is nearly finished and I've just spent a couple of hours in my own garden clearing brambles and bindweed and I'm finally about 2/3rds of the way to my back fence. My vit D/K2 mega-dosing seems to be working as I've found myself out in the sun a few times now for a few hours without any sign of red or tight skin, just some nice golden shading and, as a redhead, that's significant.

                            Now I need to figure out how best to organise my own life around eating sensibly and regular exercise and I'll probably be starting a new journal for that. There's not a lot I can add to this one regarding the effects of food on my father's condition as it's now out of my hands and the Alzheimer's will progress accordingly. I'm convinced that we made a difference at a time when it helped for as long as was possible and I'm happy we did the best we could for him. I could wish that we'd known about the effects of wheat earlier, but even if it was too late for my father, my brother and I are certain we've made significant gains in our own health and, hopefully, improved our future quality of life. It's been well worth the effort.
                            Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                            • #59
                              This is a GREAT thread.

                              When my father was ill and dying I was so grateful that I had the OPPORTUNITY to take care of him at least for a while.

                              I think you are both a testament to the human race in general and to paleo/primal eating specifically. Clearly he squeezed all that he could from life. And that is all one can ask.
                              What have you done today to make you feel Proud?

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                              • #60
                                Thanks, gdot. As I've said a few times, I feel it's important to talk about Alzheimer's/Dementia because it's becoming so common and so many of my friends have relatives with problems. I think it's important to share the fact that we did manage some improvement, even if it was only a temporary reprieve. I have far more hope for my own future now.
                                Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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