h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

That's a great one my friend

Gardens are not all about gardening. We need to be reminded of that from time to time. Thank you.

As for Life... well, as long as you have few regrets and you are happy with your place in the world now. I think that's as much as any of us can hope for.

Five Fb

I'm under too much stress to actually be happy right now. But I'm coping. Barely.

Gardening is my lifeline. I don't know what I'd do without my garden. Really.

Actually, the things that are making me unhappy are totally out of my control. F's illness primarily. I'm fairly content with my life otherwise. But I'm going to have to start taking better care of myself physically. I'm just exhausted. Not eating right because I'm too tired to cook. I'm back to fast food and whatever else is easy. My blood pressure and cholesterol are both boderline high, so I'm going to have to get those down. I sure don't want to wind up on medication. And F's illness has been incredibly expensive for us, so I'm having to find a way to juggle the bills. I did get a nice raise that goes into effect in November. That will help.

Forgive me Hypatia: I didn't know that F is ill Long term I guess from what you're saying. That is a hard thing to deal with, I know.

Do you have good support? For you, I mean? What about getting a cooking bee going? So people make 'ready meals' for your freezer. I did that when was ill and it was a real lifesaver. It meant I didn't have to think about food and I wasn't eating rubbish

Garden's are the most wonderful spaces, especially if we have crafted them and loved them ourselves for years. They can provide peace and inspiration in equal measure


Five Fb

Yes, you more than most understand how stressful it can all be.

I'll be fine. I need to take Sunday or Monday and just cook all day. That way I'd have things on hand the rest of the week. But Sunday is my day to have my Mom over. I take her to do her shopping for the week then she stays for lunch and usually doesn't leave until late afternoon. By which time I'm bushed and in no mood to spend the rest of the day cooking. I usually have Mondays off work but every single Monday it seems I have to take either F or Mom to a doctor or dentist or something. I never have a day to just do nothing....like cook.

F isn't going to get better. And he is developing dementia which has seriously complicated our lives. He can still stay home by himself while I work because I'm just a mile away and can run home and check on him. But if he gets much worse, I'm going to have to find daycare for him. Something else I can't afford right now. I may have to take him to my mother's every morning. I'm not sure she's up to that, though.

The dementia may be a blessing in disguise, though. He is forgetting how ill he is and is actually less stressed. I have him on a medication that has stopped him from getting worse. At least for the time being.

Ach, Hypatia. I'm really sorry to hear all of that. Any time you want to let off steam to somebody who has an inkling of what it's like, and who has no judgements to make about anything that you're feeling, drop me an email at greendotfingeratgmaildotcom Okay?

Life deals us really crap hands sometimes.

Is F's medication for the dementia, or for his other illness? Is it cancer?

Don't answer my questions if they are too much. I understand that. Sometimes it's fine to talk. Other times it's too upsetting. Just like most of the time it's fine going from day to day and occasionally it's way too much for one person to have to deal with.


Fb

No, not cancer. It's his heart. He has had two heart attacks and two open heart surgeries.He neds another one, but can't have any more surgery. He is allergic to heparin and the last surgery nearly killed him. It was 2 years ago, but he has never recovered. His doctors have him on so much medication that he's a zombie. Every time I try to get them to take him off of some of it, they waffle around and never do it.

At first I thought the dementia symptoms were being caused by too much medication because they came on pretty suddenly. But we have run tons of tests and they can't find anything wrong. So it is probably vascular dementia caused by the heart lung machine.

I am cutting back on his meds on my own and he is starting to show a little improvement. And I'm giving him a supplement called alpha lipoic acid which is supposed to halt the progression of alzheimer's. It doesn't make them better - just keeps them from getting worse. So far he hasn't gone down hill any farther since I started him on it. His doctor is upset at me for medicating him myself. Well, he can bite me.

I'm wondering if anyone has done a study to see if a vegetarian, low-fat diet will disolve plaque on your brain? It will dissolve plaque in your arteries. Why hasn't anyone studied this? In India, where they eat mostly vegetarian meals, the incidence of alzheimer's is 3% - compared to about 25% in the US.

As you know, my Dad was a He was a GP (do you have them in the States?) He said that doctors understand about 1% of what's wrong with us. They make pretty accurate guesswork about another 49%. But 50% is a mystery to them.

I have a nasty feeling that most doctors wouldn't admit to that

He prescribed TLC, a balanced diet and exercise as everyday medicine for everybody.

It is taxing caring for somebody who is so ill, isn't it? I know about too much medication turning a loved one into a zombie. realised that was happening and we gradually weaned him off all but the most essential medication in the last three months of his life. It's a hard thing to do, because we were going on instinct alone - not on medical knowledge. However, the motivation was that we knew he was dying and his last weeks had to be as good as possible.

Is F able to have a conversation? Can you discuss things with him? Does he laugh?

Dementia on top of his heart problems seem like an unecessary evil to add to the burden. If I believed in a god, I'd rail at him/her for that. As you say, perhaps it is a blessing for F, because it will take him away from the knowledge that he is ill. But it is anything but a blessing for you. Words really don't work in this situation.

I hope you have very good support Hypatia? Do you get respite, so that you can spend a day out every now and again? Do you have a counsellor who you can shout at and cry with when you need to let it all out?

My mom tries to be supportive. And my sis would be but she lives too far away. I try not to talk about it much with my staff or board or neighbors. I'm just not comfortable having everyone in town know my problems.

So, I'm broadcasting it over several continents instead. And I'm far too busy with our building project and the upcoming move back into the library to take any time off. One of my problems is that I'm exhausted all the time. It makes it harder to cope.


Your dad sounds like a wonderful doctor. Everyone here is pretty much a specialist. We do have GPs still but they don't practice the same way they did when I was a kid. They're called Family Practitioners these days. About the only thing they're good for is to give you a referal to a specialist for whatever ails you. That's the fault of the insurance system we've victimized by. They even tell the doctors which drugs they can prescribe. It's a lousy system.

The specialists treat only their part of the body. They see hearts and lungs and not the entire person.

I can still have a converstion with F, but he won't remember it an hour later. He used to be a real chatterbox - never stopped talking. Now he's much quieter. And no, he doesn't laugh much anymore. His cardiologist has suggested antidepressives, but I'm worried about adding any more medicine. Now I'm getting ready to take him to a neurologist. That will be more tests that indicate nothing.

I found that a counsellor was my lifesaver when was ill. Once or twice a week, for an hour, I went to see her and could cry, shout, be angry, be bitter, be sad, even laugh at things. She didn't judge me and she didn't take on any of my pain or my burden.. but somehow I felt lighter each time. It's thanks to her that I came out of that experience whole.

Ooh, I don't like the sound of having only medical specialists For a situation like F's, when there is more than one thing wrong (plus the side effects of drugs) it would be better to have a doctor who could treat him holistically. As it is, I guess you are best placed to work out what is best for him as a person, rather than what is 'best' for him as a heart patient, or a dementia patent. That's a heavy burden for you Hypatia

Does your work understand the pressure you're under at home? Is there any way you can get reduced hours, or reduced responsibilities on compassionate grounds? I know that would be looked on favourably in UK.

After all, what's most important? Work and the building project, or you and F?

Broadcast away my friend

Fb

Well, I'm the boss. So, technically I can write myself any schedule I please. On the other hand, I can't because when I'm gone for any lenght of time I have to give the rest of the staff extra hours to cover for me and there is only so much money in the budget. We operate on tax income and it only stretches so far. Most of my board is very understanding. So if it gets really bad I won't have to worry about losing my job if I have to cut back on my hours. For the last two years I've done lots of the accounting and reports at home anyway. And haven't taken any sick leave. I have about 4 months of sick leave accumulated. And 8 weeks of unused vacation. They owe me big time.

I'm glad you found a counsellor who helped you through it. I don't know who I'd go to around here. There must be someone.

hi f/b,and hypatia.If neither of you mind,i would like to add my comments,but certainly don't want to interfere in your conversation.It is very late but i will post tomorrow if that's okay. .
sals

Hi there Smurfles. Always glad to make new friends. We'll talk to you later, then.

good morning ladies!!!!!!I felt that i had to post ,as i understand a little of what you're going through.My mother was diagnosed with dementia some eight year ago,and after developing a chest infection,and spending nine weeks in hospital,we were told she couldn't go back to her beloved house.We have never been told how things would progress,what to expect,or been offered any information,apart from been told that after the initial diagnosis the illness was progressing slowly.She has lived in residential care six years now,since she was released from hospital.
If i am honest,which i try to be,it is hard to even visit,most of the time she doesn't know who we are,but she still has days when she recognises us.
She had a fall three weeks ago,and we spent almost all day at the hospital,getting her x-rayed etc,then sent home with an all clear verdict,only to fall again a week later.
That was a week last sunday,and this time she broke her hip,and has had to have a hip replaecment.
Sorry if it taken me along time to get to my point,but i believe the less medication the better,and ANYTHING is worth trying.After mums first fall the doctor prescribed an anti-depressant,(to get her back into a regular sleep pattern??).The change in her was dramatic,she couldnt hold her head up,and was zombified.She didn't want to get out of bed,and wouldn't eat.The medication was stopped ,and she improved.
I hope you find some councelling hypatia.there have been times when i have needed someone to tell me what ,if anything,i should be doing.
f i can offer a friendly ear at any time,please feel free to use it.
I think the consolation i have found in the past years is that mum is quite happy in her own little world ,and whatever she's thinking of,she spends a lot of time smiling!!!!
sal

Sal, thanks for sharing your story with us. Your mom's reaction to the antidepressants is what I'm afraid of with F. He's on so much medication already.

My dad had Alzheimer's. Some of F's symptoms are the same and some are different. I guess there would be individual differences. My dad also had a bad heart and he actually died from a heart attack. His doctor didn't suggest that we agressively treat his heart after he was diagnosed with the Alzheimer's. I really think that that was the best approach. We made sure that he was pain free, reduced his medication (he had a hard time swallowing it and tried to chew it) and let him eat and drink whatever he pleased. It seems cruel to try and preserve life at any cost once a person's mind is gone and their quality of life is constantly deteriorating.

I'm glad that your mom still seems contented. That is worth a lot. I certainly wish both of you the best.

Hello Sal Thank you for sharing your story. Life is full of tragedy, isn't it?

There is comfort in knowing that your mum is smiling and content. My uncle has Alzheimers and is still at the stage of being very frightened and paranoid about it, which is incredibly distressing. I hope that this stage doesn't last too long, for his sake and for that of his immediate family.

Morning Hypatia I think you've hit the nail on the head there. I cannot work out why some people consider that life is worth preserving at any cost I would far rather have a short, but happy and active life, than a long pain-filled or unhappy one. That was certainly the decision that made and I respect him for that.

How is F today?


Fb

F had a fall a couple of days ago. I didn't think I was going to be able to get him up. He seems to be getting weaker physically. Not much good news in his regard. I wish I could think of a way to get him to exercise a little. I'm sure it would help him build his strength back up. But he absolutely refuses.

Hypatia

Did F fall because his head was wobbly, or because he was physically weak? I mean, are the drugs affecting his balance? Did he injure himself? Did you injure yourself getting him up? Did it happen when you were there?

When was on a cocktail of drugs, he got woozy and wobbly and needed an arm to help him around.

It is inevitable that somebody who is having to rest a lot of the time will lose physical condition It is also inevitable that somebody with Alzheimers will start to get very touchy about being told what is 'best' for them.

Oh Hypatia, I wish there was something I could do to support you. Like come in for an evening - and let you go and do whatever it is that you want to do for a few hours - go to a film, a play, a concert, a drink with friends.

Just tell me if there is anything I can do at 6000 miles distance

Fb

He uses the word woozy a lot to describe how he feels. So I think his falls (he fell again today and once last week, so that's 3 times in 8 days) are a combination of the drugs and weakness. I still think that part of his problem is drug related. I've removed all the throw rugs and am going to get him a cane.

He sees the new doctor tomorrow afternoon - the neurologist. Tomorrow will be stressful for him. He has an appointment to have his teeth cleaned at 9 in the morning then the neurologist at 2. I'll have to get him showered this evening or he'll never make it by 9. It's really hard to get him up in the mornings these days.

There isn't anything anyone can really do. Just listen to me whine, I guess. My job is just brutal, right now,trying to get the building finished and then we'll have the move back. Ever moved a library? I'm sure that I'd be coping better if I didn't have that to deal with as well.

Thanks for letting me vent. It helps to know there's someone who will listen.

Oh it's hardly whining, Hypatia. It's telling it how it is. And you know I'll listen. Any time you need a listener.

A cane is a really good idea That gives F some independence, whilst also providing him some physical stability.

Sounds like tomorrow is going to be stressful for you as well... Good luck. Let me know how it goes with the neurologist. I really hope F doesn't get prescribed more medication. Especially as you are so cautious about the cocktail he's on already. Will the neurologist be able to advise you on the combined effects of any additional drugs on top of his existing medications?

Do you have community nurses in your area? It suddenly struck me that had a great community nurse who visited him a couple of times a week. And she understood the interactions of the drugs and was able to help us decide which ones he should come off when the side effects started to get worse than the cancer itself.

Good luck tomorrow my friend

Fb

I wish i could help as well f/b.Ihave found it
hard work gettng to visit my mother as i am a wheelchair user myself,and am just beginning to feel the results ,i am a little down today
The carers where mum lives understand her well,better than me sometimes,and now she is back there another problem has reared its head.
She has to have physio,but doesn't recognise the therapist,so is cautious about him.
He wants her to use a zimmer frame,but
she doesn't remember the instructions he has given her,it is useless explaining to her how
to take a step ,she doesn't understand ,or remember.
Every incident presents a new hurdle.....but i hope that it helps, hypatia, to know that these hurdles can be overcome.
I
hope that
you fair well today,and get some
answers,and some support.I will be thinking of you both.>