Any recommendations for a good and informative book

[jenniferjean]

Even though it won’t be all plain sailing, to coin a phrase, I shall enjoy being looked after too, and at least I know the score now and I know he will need even more care. I am either foolhardy or wise to do it while we can and only time will tell.

I think that is so important and it's the best thing that you are doing. You will benefit from that 'being looked after too' and you deserve it. There's a lot of talk on here at the moment about PWD being cared for either at home or in care, but it is so important to look after ourselves.

 

[PalSal]

The 36 Hour Day
NOTE: I'm in America
https://www.amazon.com/36-Hour-Day-sixth-Alzheimer-Dementias/dp/1421422220/ref=sr_1_1?crid=3TLYU0DCTZ267&keywords=the+36+hour+day+paperback&qid=1549852916&s=gateway&sprefix=the+36,aps,166&sr=8-1

Yes but the financial stuff in the 36 hour day is not relevant in the UK. But some of the other stuff is.

 

[Grahamstown]

There has already been some added value because he has really enjoyed a video on YouTube about the ship. I think he will be entertained before during and after, and whatever he understands about it, he has perked up. So I am using the forthcoming cruise in 5 weeks time, down to Spain and back to entertain him. Booking so late I got a good deal. The insurance was the difficult bit and I really had to search around and finally it was a friend who recommended this company . I have just realised that we celebrate our 54th wedding anniversary in March, I really had forgotten, imagine that! I think it’s because I have had so much else to worry about. The trip can be a present to ourselves to celebrate. I was beginning to feel that struggling through the past 4 months has taken its toll and I have felt quite dragged down, so now I have a holiday to look forward to.

The other thing I have realised that I must do now is be economical with the truth. I read about ‘love lies’ on TP ages ago but at the time I wanted to be as open as possible about what we were doing, thinking it would help to keep his memory going, but now I avoid making him agitated by telling him differently from what I am actually doing. A good example is that he hates it when I say I am walking somewhere and says why don’t you drive over and over. So now I shall just agree with him and pretend that I am driving. Hope I don’t come unstuck!

I have got both Assistance Allowance and Council Tax rebate organised and that helps with looking after him.

 

[Grahamstown]

Hi Grahamstown, we have a cruise booked as well off in three weeks to celebrate OH's 70th . Its been keeping him occuppied and amused for several months I agree with saying 'less is more 'is the best way as I organise everything these days unlike the past so if we discuss things it isnt remembered and then we have to do it all again. For me the only slight concern is going through security as OH may not understand security type requests but Im sure we will make it safely. Have a lovely time -golden memories for us at least after the cruise .

I am now telling him things on a need to know basis for the same reason you said, he can’t remember anything. Meaningful conversation about anything is no use, so it is moment to moment. I now introduce myself as his carer, and say that he needs help and most of the time that’s enough. If I really thought it was necessary I would ask for medical assistance, and I may do yet, but he is resistant to that at the moment. Now we are cruising for cruising sake because of his weakness when doing shore excursions. When I got the insurance I had to say that he would be accompanied at all times, well that goes without saying now, so he is going to have to be a bit more active on the ship now. I may get off with him and potter about but I shall have to see. Yes the memories linger on and he goes through the photos over and over again, so I take quite a lot for that reason. It has borne fruit because looking at the photos is what made him say he would love to go on another cruise. Isn’t the memory that remains and that which is lost extraordinary?

 

[WA123]

@WA123 Thank you for your encouragement, I am just hoping for a good holiday. We won’t do much but enjoy the ship. I shall report back because it is when I read other people trying a holiday it helps me. It is really interesting that he has been enthralled by the website looking at the photos and videos which brought back memories of last year, so I think it will be lots of rewatching now. It is giving him an interest even though I have to keep reminding him. Tonight he asked me where he was sleeping so his mind must be a bit muddled by the talk.

@Grahmstown I think 'enjoying the ship' is all that's needed actually. A very wise person suggested to me very early on that I tried to cultivate a 'we club' as in 'we wouldn't do that would we?' or 'we would do this wouldn't we?'. People-watching while on holiday I've found is the easiest way to create that 'we' club and always gives us something to talk about/comment on. Also think it would be good when you come back for you to tell us what worked, what was difficult and (best of all) what you enjoyed the most. I'm sure there will be some excellent tips that we can use in the future.

 

[Grahamstown]

@WA123 The ‘we’ suggestion IS a wise one because when you lose the person who used to be, you revert to the ‘me’ or ‘I’ but as time goes by and you adjust to the situation you can try to get back to being a couple, different people now. It’s very hard though when you can’t communicate as you used to do.

 

[WA123]

@WA123 The ‘we’ suggestion IS a wise one because when you lose the person who used to be, you revert to the ‘me’ or ‘I’ but as time goes by and you adjust to the situation you can try to get back to being a couple, different people now. It’s very hard though when you can’t communicate as you used to do.

@Grahamstown It is very hard I agree but I also find that the further we get from how we used to be the harder it is to remember that time. A friend said a few days ago when her husband was diagnosed 'I know we need to find a new 'us' and I really wish I'd thought of that at the beginning too. It might have saved a lot of heartache. Our new 'us' is very different to the old 'us' but it's not a bad substitution in the long run.

 

[charlie10]

with reference to the "36 hour Day"......I'm guessing it's a series because I've just finished reading one from the library: 'When someone you know is living in a dementia care community'.......yes this is American but people are people so most of it is applicable wherever. Talks about relationships, challenging situations, what to say when you leave etc.....most of the advice (with examples) is very similar to what I have read on TP and is very readable. I preferred it to Contented Dementia....I thought if I was a hands on carer I wouldn't have the time or the concentration to engage with that.

 

[Grahamstown]

@truth seeker don’t give up and try to ride the ups and downs. I feel the same but try to press on until it’s obvious he shouldn’t go which is not true at the moment. Today I said how lovely it will be to go on a cruise next month and he looked at me blankly. So I reminded him and then moved on. It is definitely need to know from day to day, so be optimistic but without being able to chat about it with him. I have a couple of social things planned but I am not saying anything until the time comes.

 

[WA123]

I know exactly how it is as my oh is completly resistant to docs and a diagnosis and frankly its been going on since 2011 so having seen the chaos of the proccedure I cant really see there is much to gain by someone telling me the obvious (rye laugh..)..I am hoping its just a blip today but oh much worse today -Im sure its a blip and I am determined to get him onto the trip as its something he has always wanted and still wants to do. Trying on all his dinner suits last night and he was chuffed so Im sure its going to be worth it if I can just hold my nerve....onwards and upwards .....

definitely hold your nerve I think. I agree with @Grahamstown when she says go for it as long as you think you can. We've just been to Florida for 2 weeks and it took so much planning on my part with my husband unable to help or even remember where we were going most of the time but at the end of the 2 weeks he said, completely unprompted, 'it's been a lovely holiday' and that made it all worthwhile. Now we're home he has no memory of what we did but I do and those memories will stay with me.

 

[WA123]

That's so lovely to hear thank you !,i have bought a dress now so have to go!!

Don't know where you're going but wherever it is I would plan to the nth degree so that you're completely confident and know what to do if something goes awry. If you're confident your OH will be too.

 

[AliceA]

The "we" is important as certainly we are in it together. I feel we are the same as ever but the roles have changed.
For us it is once again, because of what we did over the years our roles altered a few times. We were and are a unit even if one of us is a bit of a sleeping partner and the other one hands on.

I think I have proved to myself that even when the memory fails about an event the feelings engendered do not.
We have started to go to a lunch club in the village, I have to go as well so it is a bit tiring. However people there are caring and we have a laugh, after the meal we do some activity. We both come back tired and sleep.
It is a non demanding time and there is a lasting contentment. So enjoy your cruises build up all those happy feelings. Relax and enjoy. If you are they will be.

 

[WA123]

The "we" is important as certainly we are in it together. I feel we are the same as ever but the roles have changed.
For us it is once again, because of what we did over the years our roles altered a few times. We were and are a unit even if one of us is a bit of a sleeping partner and the other one hands on.

I think I have proved to myself that even when the memory fails about an event the feelings engendered do not.
We have started to go to a lunch club in the village, I have to go as well so it is a bit tiring. However people there are caring and we have a laugh, after the meal we do some activity. We both come back tired and sleep.
It is a non demanding time and there is a lasting contentment. So enjoy your cruises build up all those happy feelings. Relax and enjoy. If you are they will be.

This is all so true. If you can continue to enjoy life for as long as possible it will make such a difference to you when you are more confined to home. You will have things to look back on and, I think, fewer regrets. I also think it's important to mix with other people for as long as possible. The more you do it the more confidence you will have ready for next time.

 

[Alzheimerhelp]

Best of luck!