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Old 07-31-2011, 11:00 AM   #1
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Mum

This is my first post on this site and I am very new to the computer world, so lots of the terminology goes way over my head. Anyway, my Mum was diagnosed with Early Altzeimers nearly a year ago; the family had suspected for more than a couple of years though that it was more than "oldage forgetfulness". Well, 4 mths ago, she had 2 have op to remove an aneurysm. Then Novovirus and dehydration, a fall where she broke the top of her arm, ( another op for pins and plates to be put in), and we have noticed that although she is on Aricept, there has been a marked difference in her memory, like it's plunged! Mum thinks she has been in hospital for a week, 2 at most, but in fact it,s been 3 months out of the last 4! She's home now, not tolerating the careworkers that go in 3 times a day to give her her meds, which my sister and I had to arrange because Mum was taking them all over the place, when she fancied, and as Mum lives alone and both my sister and myself work shifts, we cannot be there to make sure they are administered on time. Rambling on now. Is that ok? Sis only wants to know details on a need2know basis and has left it to me to find out things. Mum is a very intelligent, independent woman, who thinks that she can still do all she used to, and while we are trying to keep as much the same for her, (that's 4 the best isn't it?), we are having awful problems curtailing her spending. I've stopped loads of catalogues arriving, taken her name off mailing lists etc. She could open her own shop! And what is the obsession with kitchen rolls!!! Two years ago, a work mate, who was going thro a bad time with a parent with Altzeimers, said get Power of Attorney before it's too late to do anything about it. Well we did, but nobody told us that we were supposed to register it with the Banks, Utilities, Tax etc etc. Only just found that out, and that we are now responsible for her money! I'd like to see the powers that be try stopping Mum spending her Family Allowance, (as she now calls it, and I'm 56 lol). This is such a big learning curve, I want to say thank you for having somewhere to go and vent my spleen as it were. All advice welcome and very best wishes to all in the various stages. xx

 
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Old 07-31-2011, 01:24 PM   #2
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Re: Mum

Hi Nanfred welcome to this wonderful, informative and very supportive board! I've been here 2 going on 3 years. I've been away from the boards for awhile but am coming back more regularly as I need the support

I'm so sorry for what you are facing. My DSD (Dear Stepdad) has a form of dementia, so it's different from Alzheimer's, but that doesn't matter.....I relate to everything I read here! Please don't let your lack of comfort with the computer hold you back. We don't care if there are typos, etc!

Feel free to check in here often - and post as often as you need to. I have been so grateful for the support here. It sounds like alot of this is falling on your shoulders. That's how it is in my family as well (and most of those who are active on the board). We're all in different stages of this disease. There are several wonderful contributors who have lost their loved ones, yet they come to the board to offer their wisdom and comfort.

Me - I'm in the middle of it and it sounds like you are in somewhat the beginning of it. I wish I had the right words of comfort for you. Please know that I care about what you're going through, as do many others who I know will be posting soon Take good care and know there are others who share in your journey -

 
Old 07-31-2011, 02:01 PM   #3
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Re: Mum

Thank you for our first reply. Never expected something so quick. Just goes to show that this situation is everywhere, just round the corner, but not enough people know or talk about it. Sis and I are here together and have a few tears with realising that there are so many people in this situation. Thank you. xxxxxxxx

 
Old 07-31-2011, 02:20 PM   #4
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Re: Mum

Sorry, didn't even think to ask, how are you managing with your DSD situ?

 
Old 07-31-2011, 02:29 PM   #5
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Re: Mum

welcome i am sorry to say. its such a horrible disease. take it 1 day at a time and please take care of yourself through this journey. keep venting as this board is wonderful. i found it over 2 years ago when my mom was diagnosed with vascular dementia. it got me through all the tough times.. my mom passed 2 years ago and i still look at this board every day.

 
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Old 07-31-2011, 02:47 PM   #6
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Re: Mum

Aw - you're sweet to ask about my DSD. I really just wanted to welcome you! Right now I'm going through a difficult time - another **wave** of grief is kind of the best way I can describe it.

I'm glad you and your sis have eachother. I have two sisters - one who I can lean on, and one who I can't (long story). I **really** don't know how I would be getting through this without her

Yes - sadly - this disease is very prevalent. Sometimes when I feel that I am just beyond soothing, I remind myself that there are so very many families dealing with the exact same thing I'm facing......somehow that gives me comfort - makes me feel that I'm not alone in facing this - although this often feels like a very lonely journey.

I'm glad I'm around today to welcome you! It's important that you know there are many of us here who will gladly offer support

 
Old 07-31-2011, 04:37 PM   #7
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Re: Mum

Welcome Nanfred. Sorry you need to find us but glad you did. We all take our turn with the long rambling rants. Sometimes it is just what we need to do. We have all been where you are so rant away

Hopefully you and your sister can work together. I have three sisters. One does pretty good and the other two... oh well You have some very hard decisions to make and you need to be a united front.

Mom went through that spending spree as well. It got so bad she even realized it was out of control. Limiting what she had access to helped. I had her financial POA and her financial adviser was wonderful. After she gave me the POA... she forgot it. I got a call before any money was released...even to Mom! Most of what they do is impulse and they don't remember it later so if you can delay and distract it works. The debit card was eventually replaced with a prepaid credit card... when it's gone it's gone and you might have to wait days or weeks for it to reload. Mom fused but sometimes you just have to let them fuss. You just have to figure ways to work around her rather than confront her.

Mom didn't like anybody in her house either but once she ran them off it was off to Assisted Living for her. I found that there were times I just had to put my food down and say this is the way it is going to be. DIfficult at best but you have to do what Mom NEEDS rather than what Mom Wants!

Hang with us and keep typing

Love, deb

 
Old 07-31-2011, 05:09 PM   #8
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Re: Mum

Greetings, Nanfred

Welcome to the little planet we call Dementia! Sorry you had to seek us out.

All of us are on the Dementia Orbit. Some of us are just further along than others. But we love being able to lend an ear or hand or (towel?) I think?

You will find a wealth of support and advice here. I don't know what I would have done without this group of wonderful ladies.

One of the best things you can do is find a sense of humor. It has served us all well and gotten us through some very hard times....as strange as that may sound.

But like I always tell newbies, you will make it through. And you are so much stronger than you ever thought you could be.

Keep coming here for support. Best. K

Last edited by kenbob71; 07-31-2011 at 05:10 PM.

 
Old 08-01-2011, 11:21 AM   #9
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Re: Mum

I did reply to you, then my computer played up, also, hotmail on my mobile has gone down. So at the risk of repeating myself, yes it is a horrible disease. Had words with my sister when I said that I would want to have ANYTHING rather than this for Mum. Sis not done the reading I have, but she is so much better with a computer. ( and both of us are new to Alzeimers and technology ha!). Mum had good spell today< she did remember that we are having a party at mine next saturday for my baby of 30yrs old. She couldn't remember his name though.

 
Old 08-01-2011, 11:42 AM   #10
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Re: Mum

hello and thank you for your reply. It does seem to be an army of women out there supporting. I must say that I am feeling quite overwhelmed at the moment, with trying to sort things for Mum, and still learning how to use computer. Hope you all will bear with me, then, hopefully I am going to be there for the newbies of the future.Is it correct that you have to keep all shopping receipts to account for finances, when you have POA? Even though Mum still has access to some accounts?

 
Old 08-01-2011, 07:22 PM   #11
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Re: Mum

Nanfred I am not sure what the rules are in the UK. I do handle Mom's finances here. There is nobody that double checks behind me (except my sisters), This power was granted by Mom. I keep receipts for my own benefit... to cover all the bases. Receipts are necessary if applying for Medicaid here because you have to prove that the monies were spent on Mom but Mom will not qualify for Medicaid so that is not an issue with me.

I would suggest that you find a good elder lawyer and consult with him about laws, rules, expectations, and responsibilities where you are. Better to cover all the bases huh?

Good luck with learning the computer and keep researching this disease. There is a lot to learn

Love, deb

 
Old 08-02-2011, 04:33 AM   #12
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Re: Mum

Doesn't quite sound like early onset, which is the label applied to diagnoses before age 65. Still, that's just a label that doesn't make any difference when you're dealing with the issues from the disease. It sounds as if you're trying to do your best in a very, very difficult situation. Lots of support here! Over the years I've noticed that there's usually one sibling who seems to carry the greatest burden. Hopefully your sister will start to carry a fairer portion of the worries and help out more.

The spending phase can drive you crazy. I ended up with debts in excess of $50,000 in the year that DH went through his spending craziness. His spending stage happened shortly after his diagnosis before he had a caregiver. He would stop contractors driving by, and have them do things that didn't need to be done. He would have work done on the cars over and over again. He used credit cards without thought. He either didn't grasp the concept of money or had lost the concept of budgeting. I found hidden packages. He would order really expensive professional journals even though he had stopped working. He'd make long distance calls to former clients and talk for hours. I'm lucky that telemarketers didn't discover him! I even ended up with two custom fur coats that I couldn't return. (I had told our kid who was driving not to take Dad to the mall anymore, but I didn't tell the kid not to drive his Dad to a furrier...the kids, of course, were used to doing what their Dad told them to do.)

It started fairly slowly, and it took me a few months to realize that this was part of his disease. I'd ask him to stop spending, thinking he could understand and remember my request. It got worse. I took his credit cards away, which felt awful after 20 years of marriage. I stopped the long distance calling on the phone service. I would tell the kids not to take him to stores. We tried to keep DH busy with other activities, so he wouldn't have time to think about spending money. Eventually, that phase stopped and we moved on to other problems. Whew.

 
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