View unanswered posts | View active topics It is currently Fri Apr 25, 2014 5:35 am



Reply to topic  [ 28 posts ]  Go to page 1, 2  Next
 Needing a bit of moral support tonight. 
Author Message

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Needing a bit of moral support tonight.
Hi, I'm 55 years old, British and living in Spain. I've been looking after my 81 year old dad for 3 and a 1/2 years since we lost my my mum. He has been getting slowly worse and now can rarely be left alone for more than an hour as he gets lost around the house, wets himself etc. Mostly he is quite happy and sits in his chair listening to music or sits out in the garden.
Today he wouldn't do anything that I asked him to. Refused to eat, said that it tasted like bubble gum and was disgusting, refused to get changed out of his wet trousers when he wet them and before bed refused to take his pills and sat there 2 hours after his usual bedtime. I had to use persuasion and then get firm with him to make him do what I wanted. He turned round to me and with a really hateful expression told me that I made him sick and he wishes that he didn't have to live with me. It has really upset me as I have virtually put my life on hold to take care of him. I know that it is only Lewys talking as he has almost never said a nasty word to me in my life.
Thank you for 'listening' but I just had to get it written down and don't want to burden my family with me just being silly.


Thu Oct 18, 2012 5:35 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Needing a bit of moral support tonight.
All I can say is that I know just how you feel. Even when we know it's Lewy being so thoughtless, it still hurts. Hugs to you! God bless you for taking care of your father. It's a tough and often thankless job, done purely out of love and devotion.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Oct 18, 2012 5:39 pm
Profile

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
Thank you so much. That's all I needed to hear and it has made me cry. I will try to talk a bit more on the forums and use the many things that I have learnt to help other people. I've been lurking for ages and find the posts so useful but haven't really had the courage to join in.


Thu Oct 18, 2012 5:49 pm
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Needing a bit of moral support tonight.
so glad you joined in and so sorry you are going thru this..

it has to be so hard, when you are doing all you can .. and you feel like you just got slapped..... i know that in your dads heart, he appreciates so much what you are doing.. as you say, its the lewy and the frustrations hes feeling and maybe not understanding.. and cant verbally express properly... my heart goes out to you both, take care... and please keep sharing.. it helps!!

sending big hugs and a many deep breaths.. you are doing a remarkable job caring for your dad...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 1-14,released to memory care..


Thu Oct 18, 2012 6:36 pm
Profile

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
Thank you so much for your support. I guess that I will have to start getting used to this if it becomes a regular thing but it came as a shock as he is usually so sweet and placid. As you say it felt as though I had been slapped in the face. We were always brought up with so much love and understanding whatever we did and now it's dad's turn to get that back. I remember a friend of mine saying that it was a privelage to look after her sick parents and at the time I thought it was a strange thing to say but I really understand what she meant now.


Thu Oct 18, 2012 7:04 pm
Profile

Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Needing a bit of moral support tonight.
Eyckmans, I'm glad you finally reached out. When John starting showing symptoms, all through those long months, then finally getting the diagnosis over a year later, the feelings of aloneness were pretty strong. Trying to describe what was happening to John was so difficult due to the fluctuating symptoms and when people saw him, he appeared fine. Then I found this forum and it's like having your bestest-bestest friend at your fingertips 24/7. Everyone who has commented about my posts and offered guidance or just an ear to hear has been very supportive and kind. Do keep coming back. My fear of personality changes along the lines you're experiencing has also come to fruition for me in the recent past and I know it's hurtful. Whenever that happens, try to call to mind a time in your past where your father showed tenderness and love and try to keep that image alive. You are doing your best. Are there agencies where you live that can send respite help now and then? It's important to take care of yourself too. Come back often, even if you just want to talk. There is also a section for non-Lewy related discussions.

Blessings to you.
Terri

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Fri Oct 19, 2012 9:32 am
Profile

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
Thank you for such a lovely reply Terri, My dad seems back to his usual sweet self today and I feel much better. He has got a bit of a temperature and said that he doesn't feel very well so maybe that was what brought it on. I was probably hassling him to do things that he just couldn't be bothered to do but didn't know how to tell me that he felt ill.
It is quite frustrating that nobody that isn't experiencing it really understands as he is always on best behaviour when people come. There is no help at all where I live but I have a great family. My sister comes in and looks after Dad so that I can get away for holidays and occasional weekends. My daughter lives with us and is a great support to me and will always take over with Dad when she sees that I am getting frustrated and my husband in amazing on the nights that my dad is up and down all night.
I'm probably a lot luckier than some people that have no help. :D


Fri Oct 19, 2012 10:37 am
Profile

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
I'm devoloping a thicker skin already. Dad started ranting a bit again and wanted to know who was in charge. I told him that I was in charge of caring for him and making sure that the household ran well and he said that he had never in his life see such bad organization. I was able to laugh it off tonight :D


Fri Oct 19, 2012 3:11 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Needing a bit of moral support tonight.
Eyckmans wrote:
I'm devoloping a thicker skin already. Dad started ranting a bit again and wanted to know who was in charge. I told him that I was in charge of caring for him and making sure that the household ran well and he said that he had never in his life see such bad organization. I was able to laugh it off tonight :D

He sounds so much like my husband!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Oct 19, 2012 4:13 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Needing a bit of moral support tonight.
Eyckmans,

I am sorry you have to endure this and like some of the others mentioned, some of us has been there , done that and even knowing it is the illness trying telling your own brain that when your being verbally attacked, it hurts, you really have to turn a deaf ear to it as this is going to happen from time to time.

When dealing with this in my own life with my husband I often walked away for a few minutes and sometimes not all the time his mood might have changed a bit, I do know the harsher we get they they tend to get a bit meaner.

I didn't see this note until today and I am glad Pat and a few of the others were around for you, always come here to unload if it helps, we are all about support !

_________________
Irene Selak


Fri Oct 19, 2012 5:53 pm
Profile WWW

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 236
Post Re: Needing a bit of moral support tonight.
Dear Eyckmans,
I'm glad you have come out of the silence and posted, and even more so that you have found so much kindness, as I have here. It sounds as if your dad is a wonderful person, and the Lewy changes have completely distorted his naturally courageous and maybe a little feisty reaction to his limitations, and turned that into this difficult behavior. You sound like you are dealing with this with patience, tenderness and, when all else fails, a sense of humor. But even those coping efforts wear thin sometimes. It has been such a help to me to have all these comrades in coping, with their great suggestions, and the virtual pat on the back when nothing seems to work.

Hang in there, and please do come back and share! I am sure we will learn from you, and will find your words a comfort in our own tough times.
Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD


Sat Oct 20, 2012 9:40 pm
Profile

Joined: Tue Apr 24, 2007 1:09 pm
Posts: 43
Location: Alberta, Canada
Post Re: Needing a bit of moral support tonight.
Dear Eyckmans,
It is so hard to separate the Lewy from the person. It's not your dad talking, it's the Lewy. Lewy can be mean and nasty and hurtful. Sometimes it's just easier to go along with Lewy.....don't argue with him. You'll never win, and your father will just get upset. So....agree with Lewy. Tell Lewy that he's right, the place is incredibly disorganized and whoever is in charge should do something about it. Assure him that you'll have a word with the person in charge. Then go into your bedroom, grab a pillow and punch the heck out of it. Then cry. Then breathe deeply, hug yourself and go on.

You said that he has been running a temperature and has wet himself.....does he have a UTI?? Those can bring on all sorts of symptoms and bizarre behaviors in our loved ones with Lewy.

Come here often and vent. You'll always find support.

Peace,
Suzee


Mon Oct 22, 2012 11:31 pm
Profile

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
Thank you all so much. I can't tell you all how much better your words make me feel. It is probably exactly the same advice that I would give to somebody else but it is difficult to see it when it is happening to you.
Suzee Dad had a bit if a cold and his wetting himself only happens when I'm in another part of the house or nipped out tho the shops and he can't get to the bathroom and take his trousers down quickly enough so I don't think there is any infection. To go and get a urine test here it has to be at 8 oclock in the morning which is 4 hours before Dad gets up so I only do it as an emergency measure.
Feeling a bit tired today. He kept getting up last night for a total of about a dozen times. He doesn't remember it at all this morning. I just told him that I will super glue him to the bed tonight if he plays up :) I think it was because I went out last night as I sometimes work on a Tuesday evening. He refused to eat his meal or drink anything for my daughter so I'm guessing that me not being there upset his routine. I've never been good when I don't sleep well even when my kids were babies.
I hope to be able to give back some of what I've learnt to anybody that is new to this illness.
Thanks again
val


Wed Oct 24, 2012 7:47 am
Profile

Joined: Sat Sep 06, 2008 3:16 pm
Posts: 11
Post Re: Needing a bit of moral support tonight.
Not sure if you have this availability where you live but they now sell OTC UTI test kits. My mom was getting them so frequently that we went ahead and bought the kits so we wouldn't have to take her in each time. Not sure that all doctors will trust the homemade test though. We wanted them just so we could rule that out as a reason for any new issue.
Not sure if that will be helpful or not.
Good Luck!


Thu Oct 25, 2012 1:19 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Needing a bit of moral support tonight.
Welcome Val, sorry for your need to be here. I hope you come back often for support and info. There are many helpful people here who can help you travel this very rough road you are on. Take care, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Oct 26, 2012 9:57 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 28 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr