Wednesday, 19 October 2016

Well........

It is quite common in our house these days to start a sentence with the word "Well" followed by a pause before jumping into a great long ramble.  This usually comes in response to a question along the lines of "What happened today".

So in case you are wondering what has been happening here let me tell you.

Well..........

Things have moved on apace with Man.  I will not bore or regale you with everything because you really won't want to know and I don't really want to share it all.  Some of the high points (low ones really) and some of the things which might be of use/interest to anyone else in similar circumstances are as follows.

All being well with a last couple of medical tests Man is moving to a nursing home that is many many miles away from us and we will no longer be looking after him.  He is moving to be nearer to his other son, which makes sense, but is sad too as we will not see him much.  Of course he will still be his family, but it is odd to have a family member moving so far away from you, especially at this stage of their life.  How things will work out we don't know yet, but if you don't give it a go you never know and this was the only way he would agree to move out of his house into a nursing home so we have to go with it to ensure that he is safe and cared for.

Things have been really tough since Man had the stroke, he still has pretty much the same left side weakness that he had after the stroke, so he cannot walk on his own, or without a frame.  He stopped eating and has been very ill because of that, after about 10 days of me going in every day to accompany him and encourage him to eat for 1 meal a day that has improved a little and he is no longer on a drip.  We really thought we were going to lose him at one stage, but he has picked up a little.

Sadly it seems as though he has vascular dementia.  This has left him very confused at times, we have dealt with several episodes of him thinking he has had things stolen and other events.  This will probably get worse, although apparently it is a kind of dementia that causes people to become more ill in stages.  They go along at a level for some time and will then suddenly drop quite a bit and then go on again and so on.  We have certainly seen Man dropping a lot in the last few weeks and it has been horrible.  He is also having hallucinations which are causing him to have more falls.

So the move to the home cannot come soon enough to ensure that he is cared for and most importantly as safe as he can be from the harm that he could do to himself.  Of course Man doesn't understand this at all which is very hard.

If you want to know or chat to me any more about this let me know, but I won't write any more here for now.

Family have been so so.....  Frustrating at times and then alright at others - mainly when I just jumped in and told them what they had to do!!  We have been clearing out Mans house which has been a horrible task, firstly because it is so sad, second because it is my husbands family home which is even sadder for him, and thirdly because of the amount of stuff and the filthy state everything is in.  Not fun at all.  We will get there though and it is cathartic clearing out rubbish which helps with the other stuff, although so far we have mainly cleared rubbish and not things so I expect that it will get harder before it gets easier and then of course we have the actual house to deal with.

The things I have learned in all of this, which may be wildly obvious to some of you, but were apparently not obvious to me as I had to figure them out are this:-

Really pin the hospital down and find out what treatment someone will get, what the routines are, how you can find out what the menu is, when doctors rounds are and who the matron is.  They hospital will not just tell you this stuff and unless you are there when the doctors do their rounds, talk to the staff like physios yourself you will not find out anything.

This will then enable you to turn up, find out what is going on and keep a track on progress/action/treatment.

Ask for a specific diagnosis, even if this is still fluctuating.  They will not tell you unless you ask specifically, but ask and they will tell you.

Turn up for meals if your loved one is not eating, you can help and encourage them far more than anyone else can or will, also you will then know what they are eating.

If you have a complaint or concern, raise it and it will be far more likely to get sorted, don't be fobbed off ask to speak to the most senior person - most likely the matron - and insist on discussing it and getting an answer.  Sit in the corridor outside their office if you have to until you get an answer - yes, you can tell, that is what I did one day, well, it was the nurses station but same thing.

Find out what is happening with your loved ones laundry, it might be obviously left out for you to take home, but it might not be and you might not find it or realise you have to do the laundry until the person has no clean things left.  You will need to ask about this.

If you need other family members to do things - unless you have some super wonderful family, which I hope you do! - don't assume they will do things, and don't assume they will do what you ask them to.  If you need to tell them - in a nice way of course - then tell them and that really is OK.  It isn't OK to be nasty in any way, but if something needs doing and they need to do it tell them, don't just assume they will do it.

Although it takes ages to write out long emails it can be a good way to keep in touch because you can send it to several people at once to update them.  Also, you can look back and know what was said, or what you asked different people to do if you forget.  Plus you can always write a great long litany out and get it out of your system and then go back and edit it to say the things you really need to say, not just the things you want to get out of your system.  If need be, write it, save it in drafts and then go back and edit the next day before sending it.  Don't send an angry email when you are angry or emotional as you might say something you didn't really mean or want to.

If you are clearing out, don't haul things to the local refuse site.  Just hire a skip or dumpster.  Yes, it is upsetting to fill one up, and yes, it is expensive, but it saves so much time and in the thick of these difficult situations you need as much time as you can get for yourself and to be with your loved one, not queuing up to unload your car.

Share what is going on.  You will be surprised at the people who are going through or have gone through very similar things and will totally understand and offer support and suggestions, or just listen and you know they "get it".  We really should talk about this stuff more often!  A trouble shared is far more than a trouble halved.

That is it really.  Things are moving along, Man really is not good and will not get better, but we cannot do anything about it other than make sure he is cared for and love him.

I don't know when I will be "back" although as promised Five On Friday will continue.  Right now I am thinking of aiming for two or three weeks time when Man has moved and I have had a tooth extracted - ouch! - and I will feel in better form again.

I hope that some of this might be of help to someone, to know that you are not alone if nothing else.

Thank you for listening!  See you soon.

Amy

34 comments:

  1. You're a good learner, Amy.
    God be with you as you carry on. I hope the tooth extraction goes well.

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  2. My heart goes out to you Amy, what you're going through is so difficult. Your advice is so good and I hope I never have to use it. Take care of yourself I miss you.

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  3. What a tough time you and your husband have gone through. You have given such loving care, but now that it has reached the limits of what you are able to provide I'm glad the nursing home is an option. It must be so difficult to sort out the house, and deal with all the emotions that go along with that task.

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  4. I think your tips are very useful and will help someone going through this same situation, especially as more people are living longer. Remember to treat yourself from time to time.

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  5. Hope all the plans work out, take care

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  6. Hello Amy - first of all I want to say how sorry I am that you are all going through this difficult time. I have been there.....my Dad had Alzheimer's and it was a long, slow road to diagnose it and then caring for him and then, finally admitting him to the nursing home. He actually came down alone to visit me in the early stages and begged me not to put him in a nursing home - it absolutely broke my heart when it came to that, but by then he was basically 'gone', but with bit of clarity now and again. I know how sad and difficult this time is for you and your tips are absolutely wonderful for anyone going through the same situation. I wished I had them back when we were trying to navigate this terrible terrain. I found solace in sharing stories of better times and trying to pass down the legacy of my Father's life by honoring him in small ways. I wore his shirts, I put some of his treasures in my home, I kept his photo close. You are such a good DIL for worrying about his welfare and sadly in this day and age, many elders are forgotten and neglected. Be at peace that you have done right by him and that his legacy will live on through you and your family. Sending hugs xo Karen

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  7. Amy dear your tips were right on target! You have to be an advocate for your loved one! You really must if you want to be sure they are getting the best treatment for them in particular. Also, remember to get a little rest and time away yourself, even if just walking in a serene park, quietly with husband. Stay strong!

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  8. ask ask ask its the only way, it is a stressful time for you all and everyone handles stress in a different way.
    Hope it goes well with the dentist

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  9. Amy, sending huge hugs your way! This is such a difficult time for you and your family. I've been thinking of you and glad that you posted an update. Beatrice said it so nicely. Man is lucky to have someone like you and your husband in his corner.

    Hope you will continue to post.

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  10. I deal with the hospital and medical staff all the time for my dear Dad and husband I have learnt never to take things for granted and always ask even the most obvious questions. Over time hopefully you will find some inner peace and know that you have done your best for him. Take care of yourself.

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  11. Hate to add this, but once he's moved to a permanent care facility you will still have to stay on top of them or things just don't get done. My mother-in-law had to go to a rehabilitation facility from the hospital and it was terrible (suppose to be the best, but they turnover in staff really made it bad) so we moved her to another one. The move was the right thing to do, but they really put up a stink. Just keep in mind that your loved one is the customer and proceed with what's best for him.

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  12. It is very stressful to take care of elderly parents! My mom isn't there (yet), but we have some of these problems you mentioned with my FIL. Blessings to you - hang in there!

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  13. Lots of good tips here for others in the same boat, Amy. We have two younger friends who are dealing with the aftermath of a stroke. Not an easy road to be sure. My elderly father lives 1200 miles from us but he is living with my oldest sister so that is good. Hugs to you and I hope the transition happens sooner than later without complications. The dumpster really is the best way to go...I agree with that.

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  14. Hi Sweetie! I'm so sorry you continue to be a bit overwhelmed with all of that caregiving stuff. You and your Hubby are wonderful caregivers - giving so much of your time to help Man get everything settled. Sending prayers that the facility he goes to will meet his needs well and bring relief to all.

    You bring up so many wonderful points when dealing with situations like this. Maybe that can help when things are difficult - is knowing that your experiences are helping others through your knowledge now. ;)

    Take as much time as you need for a break and know we'll be here when you get back. In the meantime sending hugs and prayers and you know where to fine me if you need anything else dear Friend!! xoxo

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  15. Good advice, Amy. I was nodding my head along with you. Wishing you all the best. Your husband's father is blessed to have family who cares about his well-being.

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  16. I actually turned the computer on, to check my emails, and send a few (yours was top of the list), but thought first I'd look at my blog and 'bam', there was a post from Amy. I'd thought maybe all was not good and thank you for letting us all know. I'm glad you can share, as it something I can't do. Yes, we've had similar situations, so understand, though will never know what other people are actually feeling. One day at a time, also breathe, take time out in the fresh air, (if the weather is good), eat properly and try and get in a little reading & crafting. It's been helpful information for people who are going or will go through those processes one day, so thanks. Take care and hopefully your lovely blogging will be back shortly.

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  17. It's so important to advocate for a loved one in the hospital. Staff are busy and can't do everything, and although I admire nurses and doctors immensely, their loyalties are divided so many ways. Great points to keep in mind.
    I hope that you will find some relief and a less stressful routine once he is moved to the nursing home.
    Hugs and prayers.

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  18. Oh, I sit here crying because this is close to home. We were going through this 8 years ago but it feels like only yesterday and it still brings tears to my eyes to remember. Bless you, my friend. It's hard. I know.

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  19. Dear Amy, you are a wonderful writer. Everything you say is 100% true, and you could write a book or brochure which would be far more helpful than those handed out to us as we went through these things. With the house, you are going through exactly what we have, twice, one parent for each of us who both had vascular dementia. I found that once the worst of the filth and rubbish is out, it became more interesting to find 'old family home' items which tend to be in the furthest corners and bottom of drawers, long forgotten by the loved one. We also found lots of money in little bags, stashed in funny places - sad, but touching. Good luck my dear, my heart is with you, and it will be such a relief when you are finished. I am still struggling along with my father's Estate, no end in sight...sign :(

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  20. My thoughts are with you and your husband Amy as you go through this anxious and emotional time, I understand some of what you are going through as my step sister and I had to do this for my step father and now my step sister has been diagnosed with vascular dementia too and my nieces are going through what you are going through to care for their Mum and keep her safe. You have some wise words to share, I hope all will be well when things are more settled and new routines are in place. Take care:)

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  21. Well...Amy I read your post with a little dampness in the eye. I am so sorry to hear all that you and your family are going through and so admire your approach - and candour in putting so much of it on your blog. It so reminded me of the time when my mother was taken ill, and had to go into a home. And the home, though the best we could find at the time, was not a good place in oh so many ways. You never think these things will happen to you, but they do. You are quite a person, the way you are tackling it all. And, clearly, so many people are with you, if not physically then spiritually.

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  22. Difficult times for you and your husband but pleased at least that things are moving on and you seem to be coping xx

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  23. It's such a difficult situation to go through but it sounds as though you've got some answers, and though it's very sad that your father in law is moving away from you, he'll get the care he needs. Thinking of you all.

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  24. Hello Amy. You're in my thoughts. Sorry I didn't get to join in Five on Friday last week. I read your blog post late last night, (blurry eyes and nearly falling asleep) and was going to leave you a comment as soon as I finished writing and publishing my blog today. Thank you for keeping in touch and for your good wishes. I'm sorry for the ongoing situation. It's not easy for you as you sort out and clear your FiL's house etc. You have given lots of good, practical advice based on your experience. Most of all we your blog friends hope you and your husband can get another break from it all and get some rest mentally and physically. Love from Linda.

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  25. Hello Amy ,well done for writing this .When my son was in a serious motor cycle crash earlier this year ,the hospital staff were so busy ,every time I visited there was a new doctor ,different nurse ,they even moved him to three different wards ,three operations ,and I was never told .When I asked ,nurse would say u have to discuss with the doctor ,who was never there at visiting .Staff never phoned or contact me because he is 22 ,there for an adult .So I as his mum was left to just worry .The whole emergency treatment and long hospital stay was all one long nightmare and one I'll never forget .I've since lost all trust in the NHS system ,my prayers and love along with his determination to recover ,which took 6months ,was how we coped.I pray that you too will get through this sad time as well as you can .xx

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  26. Hello Amy, you are certainly going through a tough time in your life, yet you still have time to blog - thank you for staying in touch with us and keeping us informed - I do hope that you be content and find time to rest once he has moved into the nursing home and settled as one can be. Thinking of you at this difficult time.

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  27. It sounds like you are coping well although I am sure you have had very down moments and there may be a few more ahead. You are doing what is best for your relative and nobody can ask more. Take care of each other and there will be better times ahead. It's not the problems that life throws at us, it is the way we deal with them that matters and you sound to be doing brilliantly.

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  28. You and your husband are being very helpful and very brave. I know because I have recently been through it and it is not fun at all. I think sometimes the cleaning is a bit therapeutic, it helps to move things out and the faster you do it the less time you have to think about it all. Hang in there Amy, my thoughts are with you.
    Meredith

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  29. Hi Amy, I'm so sorry to hear about Man's condition. He is blessed to have you and your family caring for him though. Thank you for all the wonderful tips on dealing with the hospital and clearing out their home, etc. Great advise! Take care, my prayers are with you. Kelly

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  30. Good luck with it all Amy, thinking of you and sending hugs. xxx

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  31. When my mum was nearing the end she started to believe all kinds of things - including that she had been robbed of various items, even when she was in hospital. Yes, I 'get it' and know that it's very hard work. Take care.

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  32. This is sad but unfortunately we all get old.. since breaking my arm I feel I have age 10 years, but I feel I am on the up.. hopefully your FIL will settle in his new home. Like you I would have felt taken aback that he didn't choose to live by you and your DH who was the son who 'did' for him.. but it has brought home to me how my MIL always wants my DH, her son if she has a problem, when we live 116 miles away, while his sisters live in her home town! Thank you for visiting my blog.

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  33. Such a hugely difficult time for you right now, and that's a bit of an understatement I realise. Which makes it all the more caring that you have thought to share your advice here for others to benefit from. Thinking of you.
    Lisa x

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