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 Needing a bit of moral support tonight. 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Needing a bit of moral support tonight.
Welcome, Val.
Glad you are sharing now, too. You sound like a wonderful and supportive daughter.

I agree with the "agree with Lewy" approach a lot of the time. It is easier to shrug off the hurt feelings when you can make it a kind of game. Gives you a bit more sense of control of the situation.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Nov 02, 2012 10:00 pm
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
Thank you all again for the advice and support it is really appreciated.
cmt that is a great idea about getting home testing kits. I will ask next time I am at the pharmacy.
My dad recently has started to accuse me of stealing his money and this morning he woke up accusing me of stealing his things. We moved him to live with us 3 years ago and we set up his own living room for him with all his belongings. Today he said that I had stolen his things and kept pointing at things and telling me that it is his and I have to take it back to his house. I tried to explain that this is where he lived now but he was quite angry that I had all his things here. He said that while he was in bed he could see people going through his bedroom drawers and wardrobe stealing his things.
I didn't really know the best way to answer him but he calmed down after about half an hour and seemed to forget it.
When he gets agitated he goes bright red in the face and starts twitching and moving about in his chair. It usually happens in the evening and I give him half of one of his seroquel early which seems to calm him. This is the first time it has happened in the morning.
On a funnier note he decided a couple of days ago that he wanted to wear a hat all the time as it is easier than combing his hair. He sat there all day proudly wearing a fishing hat as it is the only one he has and it made me giggle everytime I looked at him.
Thanks for listening :D


Sat Nov 03, 2012 12:43 pm
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
Just need to write this down as I'm feeling a bit overwhelmed at the moment.
Recently I have been diagnosed with oseoarthritis in my foot which has caused a really painful spur on my heel. I have been told that I need to go for daily treatment,starting with ultrasound, then magnetic treatment then laser. They have said that it is so bad that these treatments probably won't work and I may need an op but they have to go through the whole thing before they can operate. Under normal circumstance it would be difficult enough to arrange but now I have broken a bone in the other foot so have been in plaster for a month . I also have pain in my left arm more painful than either of my feet. I think it is probably arthritis in my arm also but I won't be able to go and get it checked until my cast is off and I can drive again as it would involve one person to look after Dad and another to drive me and I'm already having to get people to shop for me and take me everywhere.
I'm usually quite upbeat but at the moment I am starting to feel as if I can't cope and crying quite a bit. Everybody is being really helpful but I find it really difficult to accept help even when offered and hate asking.
I think that mostly I am worried that I won't be able to handle Dad if I get too much pain as I need my strength to lift him, dress him, bathe him etc.
Thank you for listening. It really does help to write it down.


Wed Jan 16, 2013 8:14 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Needing a bit of moral support tonight.
It's so hard to take care of ourselves when we are focused on taking care of our LOs! I hope you will take whatever steps necessary and gracefully accept whatever help is offered. You will be in my prayers. Hugs and God bless you!

_________________
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.


Wed Jan 16, 2013 11:38 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Needing a bit of moral support tonight.
So sorry about all of your health issues. This is a good time to take friends up on their offer, and perhaps this is one of those blessings in disguise. After a while, unless you are very physically strong and healthy, you WON'T be able to lift your dad. Many of our LO, when they become immobile and incapable of helping us help them become a 2 - 3 person assist. You don't want to damage your back or put more stress on arthritic joints. In other words, it may be time for you to start thinking about some alternatives, like having in-home caregivers come in, or possibly placement. None of us has wanted to do either of these things, but you can't risk your already injured body and sustain more injuries. You will do no good if you are completely unable to help. Please look into getting help for both of you, short term and long term because his disease is not going to get better, he will only need more and more assistance. Good luck, and a big hug to you, 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.


Wed Jan 16, 2013 2:24 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Needing a bit of moral support tonight.
I agree with what Lynn just said.

Take care of yourself first so you can be available in the long term for everyone in your life who may need you in some way. You are worth it. No guilt when you are giving all you have to give. Guilt and stress are as formidable enemies as the disease itself. Identifying your enemies in this process takes you to a better, stronger place.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Jan 16, 2013 2:56 pm
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
Thank you all for you support. Getting outside help isn't a possiblility for us at the moment as we don't have any spare money to pay for it and where we live it is expected that the family do it all. If my arthritis gets worse then I will have to get some sort of rota sorted with some of the other family members but I find all that stressful so prefer to do it myself when I can. I think it is just getting me down as I'm in pain a lot at the moment. Luckily when my Dad needs most lifting about is at night when my husband is home. He is marvellous. He does a full days work and then gets up cheerfully to help as many times a night as necessary.
I'm not much of a pill taker but maybe I will take something before I go to sleep so that I can sleep better as when I roll onto my bad arm/shoulder the pain wakes me up. Things are always much better when you aren't tired.
Thanks again for all the sensible and kind advice.
Hugs to you all.


Wed Jan 16, 2013 4:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Needing a bit of moral support tonight.
Just remember that "what's expected" and what you are realistically going to be able to do may be entirely different. Please don't let the expectations of others who are NOT lifting adults and doing the kind of care you are doing influence what you need to do for you and your LO. Good thing your husband is doing a lot to help, but really, most of us are not able to lift an adult by ourselves, and as his condition worsens, this will be even more apparent.

Have you contacted local agencies to see if you can get some help that you don't have to pay for? I don't know much about Medicaid, but perhaps Medicaid could help pay for at least a few hours of in home care??? Or if your LO is hospice-eligible, might there be a free hospice service where you live for people who can't pay? You don't need to answer here, just trying to give you some ideas to help the situation. My dad was a 2 - 3 person assist in his final months. There is no way 1 person in a home could have taken care of him... Take care of YOU!!! 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.


Wed Jan 16, 2013 6:45 pm
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Needing a bit of moral support tonight.
I live in Spain and at the moment the country is in financial crisis and one of the places that has been hit hardest is the medical system. I waited for 6 months to get an xray and 6 months to get a breast lump scanned last year. I don't feel ready to give Dad up yet but maybe I should start to look and see what hospital care is available for later on. At the moment the only really heavy lifting is getting him out of the bath. He used to fall a lot but after a change of medication that stopped. He can mostly get out of a chair and bed by himself. I will be able to take care of him for a while yet once I get my limbs back into better working order. I'm only 56 and am starting to feel like I have an old body!!!
Sorry to sound such a misery but I'm really not. Most of the time I'm very happy and laugh a lot and really enjoy life. I have lots of wonderful family and friends so have a lot to be thankful for and at least I still have my Dad.


Wed Jan 16, 2013 8:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Needing a bit of moral support tonight.
I didn't realize you were living in Spain! Have only been there once, would love to go back. Anyway, this puts a different spin on the situation to some degree. I didn't realize your dad was so mobile and able to do so much at the moment. With this disease things can change dramatically overnight (BTDT) so be prepared! Good luck with your medical issues - you are young and need your health. 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.


Wed Jan 16, 2013 9:12 pm
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Joined: Fri Mar 08, 2013 10:06 pm
Posts: 3
Location: Hoschton, GA
Post Re: Needing a bit of moral support tonight.
I moved back from across the country to move in with my mom and dad. I find it helpful to write about my feelings and get it off my chest too. My daddy has always been the sweetest, smartest man. He was always my hero and I gave him quite a time of it growing up. Even still I cannot remember a cruel word out of his mouth.

My latest comment from Lewy was when I wouldn't give him the keys to the car (he hasn't driven in 3 years) with finger pointed and shaking "Now Lisa, you have got quite the great deal here, I would HATE to see you mess it up!" My mother and I busted out laughing. We hadn't been laughwing much that day.

I have two sisters who live close by and are very supportive but sometimes I feel like they dread answering the phone and hearing its me! I am always giving some long detailed report of the status of my dad's decline and the details of this horrific disease. I try not to but it comes out anyway! They love me and me them but it is the most difficult challenge of my life. Only people who are doing it can truly understand.

Blah Blah Blah Blah......I feel better. TY for sharing your feelings too.


Mon Apr 29, 2013 10:26 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Needing a bit of moral support tonight.
Lisa,
Welcome to the LBDA forums, I am glad you found a place to be able to chat about what is going on with your Dad, feel free to visit often and I only ask that you stay within the subject as much as possible !

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Irene Selak


Mon Apr 29, 2013 10:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Needing a bit of moral support tonight.
Lisa - that's what's so great about this forum - we've all BTDT, or are "doing that" currently. I was wearing out friends and my family about the horrors of CGing, what my poor dad was going through, etc. They were getting burned out from hearing how burned out I was. It was good to get on the forum and have other people in the same situation give me the moral support that only they could.
I try to do the same for others, knowing what great support and info. I got on this forum back when I was still the primary CG for my dad. Others who have not been through this just don't get what it is like. Big hug, 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.


Tue Apr 30, 2013 1:36 pm
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