Introducing Me, My Father and the Alzheimer's
I've done a basic intro on the introduce yourself thread, but I thought I'd do a separate post as well because I have an interest in how the paleo/primal lifestyle intersects with other aspects of my life.
The main one is that I live with, care for, and therefore also cook for, my 93 yr old father, who has Alzheimer's, and it occurs to me that this may be a subject of interest to other PB/MDA people.
In fact my interest in low carb nutrition led me at the end of last year to Dr Davis's book, Wheat Belly, which prompted me to remove all wheat and wheat products (now including all other grains) from his diet. The improvement in his cognitive ability was evident within about a week and was noticeable to my brother who had spent a day with him in October and noticed the improvement for himself on Boxing Day. Further reading led me through Gary Taubes's Good Calories, Bad Calories to the Primal Blueprint and The Paleo Answer and a stack of other books on specific aspects of diet and nutrition, that I'm still working my way through! As are my brother and his wife (who is a nurse).
The truth is that my father is fairly well down the Alzheimer's track and was diagnosed at 90 when he had no idea who we meant when we were talking about my brother. But only 2 years before that he had been towing a caravan across the continent twice a year, navigating French, Spanish, German and Italian roads. He has no idea who I am, but crucially he trusts me and is grateful for my presence and my guidance. It's a difficult balancing act, to maintain a good quality of life for him while still trying what I can to improve his physical and mental health through diet and nutrition. He may never improve beyond his current state, but even holding the status quo against Alzheimer's is a victory and quality of life, for whatever years he has left, is our top priority.
I'm fortunate to have the support of my family (my brother and sister-in-law) in this and we're all exploring the primal pathway for ourselves while choosing what we can apply to my father without disrupting his daily pleasures.
One of the reasons I decided to join this forum and participate is that CW dominates the world of Alzheimer's support. The CW line is that Alzheimer's is progressive and has no cure and there's pretty much nothing you can do except take the medication. While the medication (cholinesterase inhibitor) has certainly helped my father, I'm not satisfied with sitting back and doing nothing else now that I have some understanding of what may underlie his condition. There are a few stories out there of people who have seen significant improvements (coconut oil for one) and I want to know as much as I can about how and why. The big difference between CW and primal/paleo, is that people are asking questions and using the information, not just waiting to be told what to do by doctors who don't really know much if any more than we do..
Also, while there's plenty of talk inside the Alzheimer's support community, I do feel that there's not much talk about Alzheimer's in general. I've been posting about it on my own journal for the last year, because I hoped that it could help to inform people and help with managing the impact of that smack in the face when a loved one is diagnosed with what is generally considered a one-way journey.
The other things that intersect with the paleo, I'll probably keep to myself for a bit and certainly keep separate from discussion of Alzheimer's.
So, Hi. If there is anyone who has an interest in Alzheimer's or dementia, even outside of paleo/primal and nutrition, I'm always happy to talk about it.
As for me, I've been losing weight for the last 6 months on a path from mostly low carb, to very low carb, to paleo/primal. I've lost 37lbs so far at a rate which has been much steadier since giving up dairy as well as grains/starchy veg. I reckon I have another couple of stone to go (28lbs) and then it'll be about body form/composition and the 6-pack I've promised myself for Christmas.
This thread hits home for me in a big way. My grandfather, almost 74, was officially diagnosed with Alzheimer's two years ago and immediately put on medication for it. I was very very close to him before moving to attend college. At first he didn't seem very different, he would forget little things but nothing serious. He is definitely getting worse though. He doesn't recognize me anymore when I visit. He knows he has one granddaughter, but unless he has been told ahead of time that he will see me and is then introduced to me (in a subtle way), he has absolutely no clue who I am, though he will brag about me to others all day long (though about my younger self, I don't believe he can remember much about me from the past few years).
My grandmother really doesn't understand the whole Alzheimer's thing, and she acts like it's all his fault or he's just being difficult on purpose and gets really mad and annoyed with him when he can't remember things, so they have fights constantly. He used to be such a fun loving, light-hearted man, but whether it is due to the disease, my grandmother's attitude, or both, his personality is taking a nose dive and he is becoming more verbally aggressive when things don't happen quite the way he wants. He will get in people's faces now and start yelling over very minor things.
I've often wondered how much a grain and sugar free diet could help him, but I know it will never happen unfortunately. My grandmother keeps an absolutely massive supply of sweets and baked goods on hand, so naturally between meals (all of which she cooks) this is what he eats. I think he would be happy enough to have his beloved meat and potatoes for most meals, but I know I'll never get the other junk out of their house.
It's very saddening to watch his decline, and I know things are only going to get worse. If I could only get my mother on board, I think I would have a good chance at getting at least the worst food offenders out of my grandparent's house, because they listen to her much more than they do anyone else.
I'll definitely be keeping tabs on any Alzheimer's updates from you, awok677. I wish you all the best luck in caring for your father.
Zeera, this is why I try to talk about this, because it seems to me that so many people are affected by this disease/condition, but I think a lot of people feel that talking about the details is invading the privacy of those whose lives it affects. I've spent the last year hanging out on the Alzheimer's Society (UK) forums and every day people come in saying - is this normal?
I was fortunate in that before my mother died (and she was jumping on every CW bandwagon going - except for statins ) I didn't know anything like as much about nutrition and the impact of carbs, I'd only read Atkins. Only since moving in have I become aware of the scale of dietary impact (if that makes sense) and with the support of family I'm able to effect changes as we learn more.
My mother also didn't really understand it and got very upset that she was losing her husband who she had expected would continue to look after her (since he was 8 yrs older, that's a bit daft, if you ask me, but still) and she'd get upset when he couldn't understand and she'd use fewer words and shout louder. Eventually, not too long before she died (brain haemorrhage), I realised he was avoiding her as much as possible because he had no idea why she would shout at him. I explained to her that his brain just didn't work the same way due to the disease and we should be grateful that he'd retained his base personality and was so amenable. A lot of the time it was like being round a small boy, with some things being a source of delight and astonishment. Easier said than done when she had her own health issues and was watching her happy retirement turn into watching her husband slip away while having to take on more of the household tasks.
The effect of removing wheat from his diet was so quick that I'm convinced it was part of this. I've also got him on high dose B12 and D3 supplements but he still has a high sugar intake due to the chocolate. I do wonder if further reducing carb and thereby insulin levels might have an impact, but he really likes his potatoes and removing all wheat and wheat products has removed a lot of the carb already. I am, however, introducing coconut oil, so we'll see how things go.
And my father seemed to lose knowledge of his family quite quickly. He's astonished if I explain he has children, even though I call him 'father' all the time. He remembers he was in the RAF during the war, but not much else. We just accept that and my brother is now - the man who takes the apples (for cider-making).
I may look at starting a thread in one of the other forum areas for lengthier discussions/blowing off steam/whatever.
Michiel, I'm glad to hear you're feeling better on primal. I can't give my father full primal because, for a start, he has mis-matched molars and can only chomp/chew with his incisors! I once gave him tuna steak, pan-fried and fall-apart-on-the-fork, melt-in-the-mouth and he chomped it into a tangled mass of fibres and complained it was too tough!
I have him on high-dose vit B12 and D3 though, because B12 deficiency is implicated in a lot of his symptoms and can be caused as a result of cumulative effects of wheat. I can't tell if it's helped any more than cutting out all grains, but it can't do any harm.
I'm a Brit, living in the South West, just down the road from Glastonbury.
It was good to hear about you all. Keep telling us more.
My mother died of Alzheimer's a year ago at age 83. She'd been diagnosed with it about 9 years before that... it was a slow, painful decline. The last 3 years she was in a home needing 24/7 supervision, and the last year she no longer recognized my dad (who'd exclusively cared for her since she started the decline). The last six months she could no longer walk, chew or swallow.
It was a horrible way to die. My dad remained devoted to her, and did all he could, to the very end.
When I was growing up, we ate mostly primal, but in the last 20-30 years, Mom listened to CW and ate the way the government said was best for us. She also came from a family history of Alzheimer's (her mother and 2 of her 3 sisters died of it).
I have hope for myself for a couple reasons... first off, I'm not biologically related to my mother (I was adopted as an infant), and I stayed eating mostly primal after I left home.
I've read that primal/paleo helps with Alzheimer's symptoms, and as they do more research, I'll be interested to see if they can find any support for primal/paleo preventing or delaying the disease.
There's no way I want my husband to go through what my dad had to.
Goldie, Sorry to hear about your Mother.
I have to admit my initial reaction to the diagnosis was to say well, he's done pretty well to reach 90, let him do/eat whatever makes him happy. If he can't indulge at 90 with Alzhiemer's, what's the point? But having seen the improvement, minor as it may appear to others, I know it's an improvement, so now I'm looking to see anything else that may tip the balance. And, yes, watching to see what they come up with.
Quite apart from the wheat, I know there's a growing suggestion that Alzheimer's is a type of diabetes and thus related to insulin levels and ultimately carbs so paleo should reduce the risk. My father had eaten a lot more carbs in the last few years, and my mother had taken over the shopping and was going for CW 'healthy' stuff. But we also believe that he reacted badly to general anaesthetics for his pacemaker (when he was 84) and a detached retina (when he was 88) which is what seemed to ultimately start his decline, as he couldn't drive or read very well.
Which all points towards an impact on vit B12 absorption which is known to cause mental confusion and memory problems. But having tackled that angle I'm also looking at trying to lower his carb intake without feeling that I'm depriving someone who's already gone well past the average. At the moment, any improvement in mental health improves his quality of life, so I feel it's worth trying.
In fact, my father always tended towards primal eating. He used to make a bone broth from leftovers and have it every morning for breakfast (if with cubed brown bread) and meals were always meat and 2 veg and he didn't really eat cake or biscuits, unless he made them himself. So I do wonder what would have happened if he hadn't had the operations or had been able to continue with his old habits. at least I had a good example early on.
Awok, you deserve lots of credit for looking after your father. I know how hard it can be... be sure to take care of yourself, too!
Hello everyone i am new here and it is good to know about you.
Just thought I'd mention here that I've started a thread of the same title in the journals area. Somewhere I expect to update regularly and document progress and changes, as well as somewhere to continue conversations about Alzheimer's and the potential of a paleo/primal approach.