DH is 63,8yrs into EOAD,knows me 5% of the time ,adl skills are iffy,goes to the bathroom every 15 min cuz he is losing the ability to know if he has to go. Shadows me constantly ect.ect. I work 40 hrs a week ,have a caregiver during the day . He gets social security disability, retirement and has longterm care insurance. He will be able to get medicare july of 2010. His money adds up to 2500 a month . I have heart issues so me working to keep us both with insurance is a must plus it is the only sanity I have left. We went to eldercare lawyer early on and had his name off hse,car and he has NO assets but for his income. We are not rich but I have EVERYTHING paid off. I am worried that I will still have to come up with out of pocket funds to place him when the time comes and I don't have a lot. PLUS HE IS DRIVING ME CRAZY!!!!!!!!!!!!!!!!!!! sorry had to add that!
I feel your pain, - bless your heart. The saddest part of the story is that 'its going to get worse before it gets better". I have not read one story on this site, with wayover 1,000,000 hits that contradicts that statement. It's the pits, - they can't help it - etc. etc., you'll read over and over...and those of us who cannot work any longer are taken down for the count.
Fight like HELL to hold on to the spirit that makes you who you are. It's so much easier to hold tight and keep it..than lose it and try to find it again.
I'm so sorry. For you, for me and for everyone on this site.
Barb, poor baby. Welcome! We just got word that our leader Joan, who will give you the "official" welcome notice, has her internet down for the next couple of days, so.. bear with us. Read, read, and read. With long term care and the retirement and so on, you should be in better shape than most of us!! The driving you crazy CAN be dealt with with meds. If any of us here ever had questions about using drugs, they're long gone! It's very important to talk to the doctor to get him some anti-anxiety meds, and maybe to get you something to smooth you out a bit! Better living through Chemistry...
There are a LOT of EOAD people here. Mine isn't one of them, he's 85, stage 6, but we all have a lot in common. How old are you? Nancy is abosolutely right that it's good for you - and your sanity - to hang onto your job. In fact I suspect there are lots of people here who will envy you that!!
barblpn-welcome to my website. my internet is down. I am on cell phone. will be sure to give you the full welcome when back on line. check resources on home page- www.the alzheimerspouse.com. left side of site- 4 sections on eoad. the eoad guide I excellent. joang
I am glad to hear from others like me. I am 60 and dh is on aricept,namenda.tamazepam before bed. So far I get relieve on a wkend here and there. I worked with the mentally challenged for 18 yrs and I had the patience of Jobe with them and with DH I get to the point of hating him. Sad part about that is I still remember when all I had to do was think of him and it made me smile. I know that all this is normal but I sure would have thought I would be better at it than I am. I can be a real b-------! I am trying to make sure that I have done everything that I possibly can to be finacially ready for whats ahead but it is sure scarey. I am working at a cancer center now and that sure brings things into perspective when I start one of my pity parties.
Cancer is not worse than dementia diseases. Nobodys pity party is less (or more) important than anybody elses. Everybodys bad times are the worst because they belong to them. Don't try to take a measuring stick with you into this caregiving business. It's horrible, it will get worse before it's over and we are all here to help one another along...
I think that it's so different when you are working with others - the mentally challenged or those with cancer- and when it's your husband - someone you have been close to for a long time. It's harder to be patient with someone you have related to as a partner when he becomes someone else. It's such a shock for me to learn he has changed so much. Every time there's a decline in his abilities, it hits me again and I grieve again. I'm not patient, even though I'm trying so hard to be. Be patient with yourself.
Welcome Barblpn. I know just how you feel. I know it's not their fault but I still lose my temper quite often. I'm glad he can't remember because sometimes I say some pretty nasty things. This is a place where you can get all kinds of information and if need to vent, we're all here for you.
Barb - I too say some pretty nasty things sometimes, but we are HUMAN! And this is hard work, not something you can "leave at the office" when you head home for the night. You asked about "out of pocket costs" when placing. We too have long-term care insurance and one thing I have found is the "place" you choose will determine if you have any out of pocket expenses up front. The place where my DH may end up if he gets placed has a fee of $2500 that doesn't go towards the monthly fees, but is an "admin" type fee that is non-refundable. I don't think our LTCare will reimburse that either. So that will be "out of pocket". Also, some want the payment "on the first", like most house payments....you pay it on the 1st, but it's for the 1-30th. So that would be "up front" as well. A credit card payment might be a good way to avoid "out of pocket" until you get reimbursed by the LTCare company, OR, when you are considering placing, ask if they will bill and get reimbursed by your LTCare company directly...leaving you out of the loop of payments. Not sure how your LTCare pays or how much, but some things would still be paid for by you, i.e. incontinence supplies, meds...just a thought or two about this. Some others have already placed their loved ones, so they may also offer you some insight in this area...WELCOME to a place of refuge...
This is a safe place to say the things you can't say anywhere else.
It is NOT easier in the early stages.
It is NOT easier to caregive dementia patients than to caregive cancer patients. It might be harder. Cancer caregivers aren't as likely to die from caregiving, so cancer might even be easier. But probably hurts just as much.
And do take advantage of medications to smooth out your situation. For either of you or both of you.
I have a call into our longterm care rep. (STANDARD) now to find out how to get all the particulars. I am now paying out of pocket for daily care because I am assuming(yes I know ass-u-me) that since my caregiver is not certified and is just a friend of the family ,they would not reimburse. I am wanting to find someone to use for weekends so I can get away. I asked my caregiver last nite if He could stay fri and sat nite and his response was " I am afraid dh would think you had left him and I probably would not get any sleep worring about dh " oh well. FRANKLY I DO NOT REALLY CARE WHAT DH MAY THINK ! I have a rv (in my name) and just want to get out and land in some quite place! thank you all for the comments ,it is great to not feel alone! barb