New to this frightening world

Discussion in 'I have a partner with dementia' started by SimplySimon, Apr 15, 2018.

  1. Razz

    Razz New member

    Oct 13, 2017
    9
    Hi
    I now care for my mother who has mixed dementia with early Alzheimer's , my mum was diagnosed in September 2016 and the disease is thankfully progressing slowly. Stress brings on the worst symptoms , so I try to keep things simple and easy. My mum loves going on holiday and it gives her great pleasure looking forward to holidays and what she is going to do.
    Holidays are a bit more stressful than they used to be with her as all the familiarity of home is gone. I will keep going on holiday with my mum as long as she is able , in fact we are going away to Lanzarote in a few days then again in the Summer for a holiday. My advice is keep doing what makes you both happy , so keep travelling as long as you can both cope with it. Live day to day and enjoy .
    Do get all the entitlements , carers allowance , attendance allowance and also reduction in Council tax , it all really helps especially as I can't work much now due to cari g for my mum. Good luck and enjoy .
     
  2. Debs42

    Debs42 Registered User

    Jan 27, 2013
    32
    Re council tax reduction - under the legislation someone with a diagnosed mental disability that will not get better (eg dementia), is classed as a 'disregarded' person - awful word but it means you can get 25% reduction if there are only the 2 of you living in the property, just the same as if you were a single person. The small catch is that you normally have to be in receipt of other benefits to qualify. If you are over 65 attendance allowance is available and is not means tested - you just have to complete a very long form to provide evidence that your partner is unable to manage daily living without help. It asks about things like cooking, cleaning, washing and dressing, shopping, dealing with paperwork etc. The GP or doctor also has to certify the applicaion. Once you have that, or another benefit such as carers allowance, which is means tested, you can apply to the council for a reduction. In our case that was quite quick and easy and my husband who has Alzheimers, gets about £55 a week attendance allowance and we get the saving on council tax on top - worth having. Sorry I don't know much about the other benefits you can claim, as we don't qualify for them.
     
  3. Herewego

    Herewego Registered User

    Mar 9, 2017
    92
    I have known my husband was headed for dementia since 2011 (was in his mid 60's) although we only had the formal diagnosis last year (2017). In 2011 we did an around the world trip taking 3 months to travel to some places we had both wanted to go to. It was only during the trip that I came to start thinking that he was begining to suffer from memory issues - I had written down a 'travel guide/plan for him as I knew that he would want to know where we were going, when, where we would be staying, for how long etc. This did help, but I had to remind him to look at it as he asked numerous times what was happening etc. I then found that he wanted me to tell him and he would then make notes to himself, writting down what I said about where and when etc.

    Before we left the UK I had also begun doing all the driving whenever we were going somewhere together so did all the driving while we were on our trip and have done so ever since. He has asked a few times (before he handed his licence back after his diagnosis last year) to drive but apart from once he accepted that I would drive - on one occassion he asked numerous times, but I firmly but kindly said no and then he stopped asking.

    Our last trip Christmas New Year 2017/18 was for 6 weeks to Australia to visit our daughter. I was already aware that he does not cope with frequent change very well and finds it very disorienting, so made sure that we only stayed in 3 different locations, but even that was disorienting for him. By the end (last 2 weeks?) he was saying he couldn't find our cars and wanted to contact the police; his laptop was gone too (he had not taken it on the holiday) and the fireplace had been taken (we have one at home but where we were staying didn't). He seemed to have lost the understanding of what it meant to be in Australia and the UK.

    We have now been back for 3 months and he is struggling to recognise our house as our home of 35 years. He asks if he can go 'home' and will I take him; asks where a bed is that he can use; wants to move his clothes to a 'safe' place; too many different things to list here but suffice it to say that while on one hand he acknowledges this is our home in almost the next sentence he will ask how long we can stay and what does it cost.

    In the early stages of my OH's dementia (2011 - 2016) travel was OK. Our trip to Canada in 2016 we changed location quite afew times in 4 weeks, staying in the same place for 2 weeks, he never really was able to find his way around or remember where his room was etc.

    Since 2016 we did one week away in the UK and then the 6 weeks in OZ - as he has now deteriated further, I guess we won't be travelling again, it is just to disorienting for him.

    Overall as dementia affects everyone differently, as others have said, do it if you can but I know now that we have done our last overnight trip together as my OH finds it just too disorienting and stressful. You will know when the time has come to move on to day trips instead.

    BTW - with regard to the LPofA -I trust you are planning to do them yourself, they are a little daughting at 15 (ish) pages but actually are straightforward to complete. Then if you need to make certified copies, myself and a friend purchased self inking stamps with the required wording for each page so all you then need to do to each page is sign and date. I had done ours when my friend said she was going to pay someone (solicitor) to do them - I helped her do it herself and she has now helped one of her friends - who is also going to use our stamps :) a result!
     
  4. T4bsF

    T4bsF Registered User

    Jul 21, 2015
    4
    Hi Simon - with regards your LPA - sorry to say, but it may already be too late to use the LPA route to helping your wife. To obtain this - the person involved has to have what is known as "capacity" - which means that they will have to convince an independent person, that they really understand what they will be signing. It doesn't necessarily follow that a person won't have capacity once they have dementia - but it could be the case. For instance when we filed for an LPA for my brother - although he was fairly advanced with the dementia in some respects - he did have days where you could hold an almost normal conversation with him and from answers supplied and questions asked by him, you knew he was compos mentis at that particular moment in time. Fortunately, it was on such a day that an independent official was with us when it came to the signing day and she was convinced that the explanation she had given him of what he was signing, was fully understood by him at that time. The following day would have been a different story! If that had been the case - we would then have had to get a Court of Protection Order instead of the LPA.
     
  5. Mum123

    Mum123 Registered User

    Mar 25, 2018
    10
     
  6. Country lady

    Country lady Registered User

    Dec 5, 2017
    17
    Female
    Simon
    My husband has deteriorating dementia ? Alzheimer type . We both retired in 2014/5 & always enjoyed travel . This year we went to SE Asia and despite some ‘ sundowning’ issues- which people on this forum were v helpful with advice for me at the time- we had a really good time . 2 flights home & 2nd one from Abu Dhabi was v stressful - so much that I thought we could never travel long haul again . But- time heals all wounds & with hindsight it was worth it . He didn’t really disturb anyone else except me .....and Airline staff were v kind . ( wanted to walk/ use toilet/ agitated). My feelings are that as long as we possibly can we will continue to travel - going to Greece in May with friends - and I would advise you to do the same . Who knows how long I can handle him traveling - but for now life goes on. I would guess that your Wife really enjoys the adventure of travel & you both can cope fine fior now .
     
  7. Karen22

    Karen22 Registered User

    Nov 3, 2012
    80
    Hi,
    You say that you thought your wife might have thyroid problems in your post. Have you checked this out thoroughly as it can cause no end of problems including memory issues. Don't take your doctor's word for it that everything is ok.
    Karen
     
  8. evie

    evie Registered User

    Dec 11, 2009
    10
    glasgow
    Hi
    My husband was diagnosed in 2009 when he was 61. Our youngest was still at school and I had no idea of the length of this journey.
    My attitude is ‘live in the moment’ and travel is fine as long as you are aware of potential problems. We have travelled a lot but am very aware that I am the responsible adult. (We we’re in Australia and Vietnam this year)
    I find that having my company 24/7 is great for my husband (sometimes I would like a break! ) there are places to see , things to do which is good for both of us.
    I presume your wife is happy in the caravan so that’s a plus. Good to have a way of locating her if separated (I used ‘unforgettable’)
    Yes there is disorientation but it happens at home too.
    Enjoy living. That’s what is important
     
  9. Sandyray0521

    Sandyray0521 Registered User

    Apr 6, 2014
    2
    Jackson, MS area. USA
    Hello Simon,
    I am in the USA. My husband was diagnosed with Alzheimer's "officially" in 2012. We knew well before that. We continued to travel up until November 2017. Yes, there were bumps in the road but we managed. When we spent a month in Europe the one thing I insisted on was to let me handle all the money. This is after so many missing wallets, etc. One person less likely to have confusion. He agreed. Our trip was wonderful. We went on a Rick Steves Tour. All of our travelers were so wonderful and helped me keep an eye on Roy. I would believe the caravanning would be the best way to travel.

    I am writing with a whole different slant. Knowing that you are so early in on this awful disease please read the book, The End of Alzheimer's by Dr. Dale Bredensen. I wish that it had been available before my Roy reached the later stages. I am not sure how long it will take for the powers that be to admit that this disease as well as many others are because of our lifestyles and the toxins in our world. I am not sure how the UK handles this illness but the USA basically does nothing. Roy was on the medications that hopefully slowed things down. Besides that nothing. We sit now in the Veterans Nursing home. Still fighting every step of the way. We still have times to share. I let know one tell me "you can't". We live for his contentment and our love. I don't believe your best answers will ever come from the medical or insurance field.
    Go with what feels right for the two of you. Good luck.
     
  10. yildiz

    yildiz Registered User

    May 23, 2011
    14
    glasgow
    Hi Simon,
    My mother lives with my husband and myself, we travel often,and have a holiday home in Turkey which we all go to 5/6 times a year.In the beginning it was tough, but I learned to have the same clothes and pjamas in both homes.I put a bracelet on mums wrist with my phone number on it , just in case.When she gets disorientated check for urine infections , these happen often and can be easily dealt with with antibiotics and fluids, lemon juice in wsrm water every day helps. At airports, they now have a vunerable persons lanyard which is bright green with yellow flowers, write and request one, they gove you priority at security and check in it simply makes life so much easier,my mum is 80 has had alhzeimers for the past 8 years ,I give her a cocktail of vitamins, every day which has made a huge difference to her condition,I don’t tell mum when we are going it makes her too anxious, I simply pack and organise and load the car, when its time to go she is fine,and happy to travel,she uses the same plates and cup etc, familiarity is very important to her,and we have lots of music which she loves.We take my mum everywhere with us,we’ve just came back from Adana in Turkey,without a hitch, plenty of incontinence pads and an ipod and earphones for her music,I make playlists with all the old songs she likes,organisation is the key and don’t stress,we learned to live with it
     
  11. Chrismitch

    Chrismitch Registered User

    Jun 23, 2011
    127
    We travelled extensively for years and although there were some difficult moments it was well worth it. On the last trip we took along an old friend which helped me to cope mentally as well as physically. Waiting for me while I went to the loo was difficult. He thought I’d been half an hour and not 5 minutes, so we used the disabled toilet together wherever possible. Or ask someone to chat to her. That only works 50% of the time though. I printed out and handed out small cards explaining the situation and asking for understanding if any difficulties arise. It worked wonders. I had to translate them into several languages! Eventually I found it too exhausting. But that’s fine. That’s the time to stop and do more relaxing things. Good luck.
     
  12. Country lady

    Country lady Registered User

    Dec 5, 2017
    17
    Female
    Thank you SO much for the info on Dr Dale Bredesen “ book . I have read it & am organizing a visit to one of his trained Practitioners. It is a wonderful book & I”m hoping that the programme will work for us . I have already made adjustments to lifestyle & diet in past few days . Determined to give it every chance . Thank you again ....
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,550
    East of England
    I looked to see if anyone else had seen Great Canal journeys and found this post from a few months ago and I really agree with you. I recently found this series and they have encouraged me a lot to keep doing carefully managed trips with my husband. He enjoys the programs too and actually is able to identify with Pru when she says things about her memory. Timothy admits that he gets frustrated and impatient with Pru very often but their love for each other shines through.
     
  14. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    I think this has been the most positive thread I have ever read on here and I love it. My husband was diagnosed the week before Christmas last year at the age of 59 and I thought our world had come to an end. We have been together since we were teenagers, loved our holidays and have been to so many places in the world. Just as we'd reached the point in our lives when we were looking forward to spending more time together this happened. However I too realised that things hadn't changed overnight, they had been changing gradually over time until we found ourselves at this point. The best book I ever read was Contented Dementia by Oliver James. The Contented Dementia Trust has such a positive attitude to this whole thing that I just started to see it all from a different perspective. We went to Lanzarote in May which was a huge success (lots and lots of planning went into the run up, the journey and the stay) and I've just booked 2 weeks to Florida in January/February. I know there will come a time when we can't travel but until then I'm making the most of it.

    As someone said in an earlier reply this isn't the end just the beginning of a new way of life. We have slowed down, I am more patient and I watch all the time to see what small changes I need to make to keep everything calm and stress free. If I do that I find that we still laugh a lot and still have good times together. Good luck.
     
  15. Country lady

    Country lady Registered User

    Dec 5, 2017
    17
    Female
    We are just back from Spain . Only real problem is the travel . He gets agitated after a certain amount of time on airplanes. I think it all builds up - delays before flight/ security etc. I was too cautious re giving him extra medication but have discussed it with GP & will know better next time! We have a trip to Krakow next month & I will be more prepared & avoid any stress. When we get to hotel or apartment- he is usually fine ( same as home- which I’m used to) I’m finding his boredom the hardest thing as he no longer reads & his attention span is v short.
     
  16. PalSal

    PalSal Registered User

    @Simon
    Welcome,it appears your first post here has produced lots of helpful hints and suggestions. That is what I love about TP. And it helps as one goes along and encounters new situations. I think Pete's suggestions here have been super. Travel while you can you are most fortunate in that it sounds like you are retired. I had to go to work everyday in the early years (my hubby was 49 when diagnosed), so I was unable to travel with my husband, just a few standard holidays off work. By the time I could retire, the disease was advanced to the point where daily routines were more comforting than travel. So, go out there and enjoy your caravan as long as you can.
    Like one of the members said, stay strong....but find moments of joy in everyday. Welcome.
     

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