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Dementia with Lewy Bodies and SIL

(24 Posts)
Flowerofthewest Thu 18-Jul-19 14:10:46

I'm feeling hurt and cross with a comment from SIL
My DH is going through tests for Dementia. It is early stages but he has confusion..disorientation. ..hallucinations and memory problems.
I spoke to his sister yesterday, her husband died 3 years ago after living with Parkinsons Disease. We are not close although we were there for her. When talking about DH and diagnosis her reply was. 'Well, at least there's an ending to it".
I'm trying to live day by day and making the most of each day. DH is his old self 95% of the time. Evenings are worse with the confusion.
I'm fearful of the future but try not to think about it too much. It's scarey.
I just feel her words were uncalled for and thoughtless.

Izabella Thu 18-Jul-19 14:21:49

flowerofthewest I am afraid thoughtless and unnecessary words and platitudes may be a recurring theme. I was diagnosed with Alzheimers in February and am often given well meaning 'advice' by people. It is very difficult., especially as I am a retired medic with a lot of still retrievable knowledge. I can only assume your SIL is still grieving or unable to comes to terms with what is often interpreted as unfairness in life.

Make sure you have time for yourself and keep up your interests. Seek help from wherever you can get it and never be afraid to ask for help. Access the Alzheimers society . I will try and find you the link when I remember how to access it.

I understand the confusion your OH is experiencing. I feel discombobulated so often these days and it is distressing for myself and CH (current husband) I wish you both well and know you will get much support from this forum as others come along.

Izabella Thu 18-Jul-19 14:23:33

Got it!

forum.alzheimers.org.uk/

kittylester Thu 18-Jul-19 14:36:30

Great minds Izabella.

When you have a diagnosis please contact the Alzheimers Society to access their help too.

There are courses for Carers that you might find helpful.

You must be very upset about your sil's comments but you will find lots of support on here, on Talking Point (the forum Izabella suggested) and from the dementia support workers at the Alzheimer's Society.

kittylester Thu 18-Jul-19 16:12:54

I forgot to say that lots of people living with dementia become restless in the evenings. It's called sundowning but I don't think a definitive cause for it has been established yet.

mumofmadboys Thu 18-Jul-19 18:13:32

I would try and ignore SIL's comment. Perhaps it wasn't intentional to make an uncaring comment.

janeainsworth Thu 18-Jul-19 18:22:59

Flower and Izabella you might like this article which is one of the few I have read about dementia which has a positive message.
www.theguardian.com/society/2019/jul/04/diagnosed-dementia-thought-end-world-its-not

Doodle Thu 18-Jul-19 19:05:58

izabella I have posted a few things about my dear brother and his Alzheimer’s. I do hope I am not one of those who has posted well meaning advice to you blush. If I have I’m sorry. I find your posts very interesting. It is unusual (but really good) to have the opportunity to hear from someone in the early stages who talks about what life is like. My grandmother and brother both had Alzheimer’s and I wonder if it is coming my way too. I actually have a rare memory problem which means I don’t remember things from the past ( bit like the opposite of dementia) which makes life difficult if doing any tests because I don’t remember now, but then I never did!

Oh sorry flower I didn’t mean to hijack your thread. I am glad your DH is himself most of the time. I hope you get all the help you can early on. If I can offer any advice, from experience with my brother, routine and familiar surroundings are a big help. Treasure your time together but take any help you can. I wish you well.

Izabella Thu 18-Jul-19 21:46:51

Doodle flowers Your input is always appreciated.

flowerofthewest do come back to us if we can help

Izabella Thu 18-Jul-19 21:58:36

janea I have pm'd you

crazyH Thu 18-Jul-19 22:12:26

Magnanimity abounds in this thread. Goodwishes to all.

janeainsworth Fri 19-Jul-19 09:53:02

Sent you a pm Izabella

humptydumpty Fri 19-Jul-19 10:37:57

I thoroughly recommend a very uplifting series just finished on TV (BBC I think): The Restaurant that Makes Mistakes, about an experiment where a pop-up restaurant was run for 5 weeks with staff diagnosed with early-onset (pre-retirement age) dementia of various types.

Flowerofthewest Fri 19-Jul-19 14:36:12

Thank you all for kind and helpful comments. I will certainly keep in touch. X

polnan Sat 20-Jul-19 09:33:32

praying for you for those who don`t subscribe to prayers

good thoughts winging your way.

Elenkalubleton Sat 20-Jul-19 09:43:35

This has been a very interesting topic for me,on my husbands initial visit to the Doctor in November last year at his request.On doing a simple test with him,she then sent him to a memory clinic,who then sent him for brain scan,we will know the results of this on August 1st.In the mean time It’s come as a shock to me,so much so that am on sleeping tablets and antidepressants.But I also needed to protect my future so got POA sorted.Also just for anyone who dosnt know, went to solicitor and got severance of tenancy, which means if he has to go into a home,the authorities can only take the value of his half of the home.Therefore protecting my half.I hope this is helpful for you all who are affected,lots of people are not aware.It is a dreadful time for us all,and can only do are best to care for our loved ones,while trying to stay sane.💐for you allxx

Esspee Sat 20-Jul-19 09:44:03

I was guilty of asking an inane question when the specialist confirmed my husband's terminal cancer diagnosis. My mind had gone into overdrive and I couldn't believe what had just come out of my mouth. I do notice that happening to others especially with sudden bad news so don't dwell on your SILs comment. She is probably regretting it.
flowers for you.

Hellsgrandad Sat 20-Jul-19 09:44:49

Flowerofthewest, Please may I add to the rest of the lovely advice that you've been given.
My beautiful wife has had Alzheimers for fifteen years now having been first diagnosed at 60 years of age. I cared for her at home for eight years and for seven years she has been resident in a care home.
My point is, always make some time for yourself! When my wife went away I returned to an empty house and wondered what on earth I was going to do now.
Friends who knew us as a couple had difficulty accepting me on my own and I suddenly had to start out on a new life - not easy when you're approaching 80.
It's very true that the help from The Alzheimers Society is wonderful and I have found that a local charity called Carers Careline have been a fantastic support - they designate someone to phone you from time to time just for a chat and that phone call always seems to come when you're at your lowest.
I'm so sorry that you and your DH have been hit by this awful illness but there is plenty of help and support out there as you've probably gathered by now from the lovely ladies on this site.
God Bless.

Anneeba Sat 20-Jul-19 10:21:59

My mum has Alzheimers. When she was first diagnosed I made up a photo album book using an online company (easy if you are OK on a computer; grandchildren would find it simple if not!), full of pictures going through her life, up to present day with all the family members she loves. She found it nice but a bit boring in the early days when she was still able to do more participatory active things, but now, a couple of years later, she is thrilled to go through it with any visitors. It's a new surprise each time it is produced {wink}! Her form of dementia means she recognises us all, but is distressed by her lack of memory for other things, yet the book really helps prompt memories from the past, giving us things to talk about and reminding her of happy times when we were all a lot younger. Your husband might not want to see this yet as it may seem like a precursor for sad times ahead, but it might be something useful to have ready for the right time. Of course it is harder for one's life partner to develop dementia than one's parent and I wish you much luck for the future. My mum is still happy most of the time and loves, if not a good belly laugh nowadays, at least a sweet smile and a wry smile too. She also loves to see little phone video clips of her grandchildren and great grand children; guaranteed to bring a smile to her face, whether they are new ones or from the past. Yes, great advice from posters advising you contact the Alzheimers Society for support for you both.

MargaretinNorthant Sat 20-Jul-19 10:47:39

Hellsgrandad,
That was a lovely post. I am 82 and lost my husband to Lewy Body Dementia. That described how I felt too, and I found it very supportive.
God Bless you too.

Jennyluck Sat 20-Jul-19 16:41:13

A diagnosis of dementia is devastating. My husband has had for 3 years now. I’ve had well meaning friends telling me horror stories about what other people they know have gone through. I hold onto the fact that everyone is different. My own health has suffered, we manage day to day, but it’s hard, I still work. I know I’m sinking but have to carry on.
My advise is take it one day at a time, and don’t worry about your sil’s comments.

kittylester Sat 20-Jul-19 17:33:12

Jennyluck, if you haven't already, please contact the Alzheimer's Association.

MagicWand Sun 21-Jul-19 01:39:00

As well as Alzheimer's Association there is also a very helpful website dementiauk.org and someone recommended Admiral Nurses who can help although their cover is a bit of a postcode lottery.

Jackie1980 Sun 21-Jul-19 09:52:54

This truly is a horrible illness that robs the sufferer of precious memories and is devastating for the family to have to watch the deterioration. My Dad is 84 and went into a lovely care home 3 weeks ago as he has terminal cancer and Alzheimers. His dementia started around 2 years ago but the last 2-3 months have seen a rapid decline. He went to the memory clinic but sadly due to his cancer treatment they were unable to help with any medication as it would clash with the cancer treatment.
Sadly around 4 weeks ago Dad took a huge nosedive and although the carers, who were all outstanding, were increased from twice to four times daily and then the last few days overnight care was added and I took a week off work and stayed too as mum couldn't cope. We are extremely lucky that Dad was given a place in a care home just a 10 minute walk from their home where he is getting the care he needs. The home is lovely and staff are so lovely and caring. I see Dad every day as he is on end of life care now .. sometimes he knows me sometimes he doesn't but I just go along with anything he says as he is easily agitated if confused. In the last 3 days I've been his sister, his mother and his daughter. It's so distressing and my heart goes out to anyone suffering with or watching a beloved relative going through it. I show him pictures of his grandchildren and great grandchildren .. sometimes he recognises my sons - 29 and 27 - but their children 9, 7 and 2 seem to have been lost completely 😢😢❤