I've gone through a strange week. It started with lunch with two couples where I started talking about AD and felt I'd seen their faces go white and I changed the subject. I came home once again convinced I wasn't getting any support. I've been sending out all kinds of signals and have been very willing to get some help; but, it's never been offered.
Well that's completely wrong. I still don't believe it; but, it's true. We went for a visit on the weekend and I told this close couple that I wanted to talk for hours about it all and I needed that. They were willing and even though it was hard in places the main thing that came out of it is that I looked in their eyes when they told me I was blocking everybody and I was so tired of conversations going nowhere I stayed calm and receptive and it finally came through. I'm not asking for help. Instead I'm tired of telling everyone the most recent bad news and I'm holed up in my trench and I wasn't listening. I've spent months upset that friends and family aren't rallying around more.
So I've been on the phone for two days. I'm actually listening. Every one of them said the same thing. I block. I deflect. I don't pursue. I don't tell them what they could do for me.
I just hung up from a SIL where I ran by her what the 77 year old BIL could do. Take her once a week for an afternoon and start giving me a break. They would LOVE to. They will take her the whole day. I wanted to go to the boy's weekend I said; but, it's too much to ask that they mind her for two days. No. They would LOVE to and they can handle it.
My SIL got emotional that I was finally receptive to help while I stared at the phone wondering what space aliens we all are.
I'm wrong. I talked to a dozen people. Unformly they said the same thing. I still don't believe it and I don't have a clue what I'm going to do with most of a day a week (I haven't talked to them yet because they're out in Victoria, Canada right now but the SIL is so happy I'm finally letting them there's no doubt as I type this they'll say yes to something like this weekly thing).
The key was I started listening really and then I asked for something they could say yes or no to. Not everyone is as lucky but I'll bet there are some out there who are in a similar position if only we would ask for something specific for them to do even though we feel we've already been open to help. I can't be the only one in this weirdness where I'm certain I've been asking and they're certain I haven't. I can't even take this in that I was so wrong about most of my friends and family when I was so positive.
I hope somebody else reads this and goes out and finds the same thing.
Wolf-first of all you are fortunate to have people ready, willing and able to help you. You are right in feeling that we tend to isolate ourselves thinking no one will understand what we need. It took courage to take your first giant step.
Wolf, I think you are right on the money. I think that we talk about our problems and expect people of OFFER help and what we need to do is ASK for help. Easier said than done sometimes though.
Please read this blog - http://www.thealzheimerspouse.com/Askingforhelp.htm - which not only validates what you are saying, but gives excellent advice on how to ask for, and get what you need, from those willing to help.
Very much easier said than done. Where I need help is MONEY and some in my family have plenty of it. Unable to ask...too humiliating.
Another thing, I am surprised no one has asked my DH address to send him a card, even a gift card he can use on outings, money for toiletries..
I have listened for triggers ie what can I do to help, is there anything I can do etc. Maybe I just griped about this situation for so long and from so far away, that they are all tone deaf to it by now.
I do hear disapproval in some family members voices when I explain I will need to file bankruptcy within the next six months. In my world, I could give a rat's behind what happens to my poor credit card companies, compared to getting another month payment for the ALF.
Yup, I didn't plan my future well. Yup, I gave my DH with degenerative Neuro condition a great life and extras along the way, because his life was more important to me than my future. Yup, my financial condition can be traced to decisions I made. Such as falling in love with a great man that had a crappy gene-pool. I could have walked away.
Sheltifan, I hear you! When I end up placing my DH I will probably have to file for bankruptcy also. I'm sure the Veteran's Home will take most of his pension & SS & I need every penny of that to pay our bills. I didn't plan my financial future to include AD. We would have actually been fine if not for this dreaded disease. My only saving grace is that all my children say that I can live with them which I will probably have to do.
Elaine, the VA social worker told me when they go into the VA homes you have to apply for Medicaid. So whatever applies for medicaid as far as what you get to keep should apply there. I would be talking to a VA social worker now and start finding out. If you can find out now,it will stop a lot of stress.
We did plan for our future. Not AD...but stashed all we could away. BUT...AD is so costly that it depletes savings very quickly. At $40,000.00 minimum (for ALF), it goes very fast when you have a household to keep as well.
I see everything is there since 2008. I'm not sure that if I had read that it would have changed things for me. It isn't solving my problems trying to get my wife to bed one more night and it doesn't solve the financial burden which I will be sharing down the road when we're also further along.
I believe that if I hadn't had that epiphany moment it wouldn't have mattered. It doesn't solve anything else but it solves this:
(Wolf last week)
"Oh god what am I going to do on Thursday?"
(Wolf now)
"Hi Jim, I really need your help this Thursday. No? Hi Sue, I really need your help this Thursday. Oh good."
Elaine, I think if I have to put my DH in a NH I'll be in the same situation..while the checks won't go to the NH ( won't have that) I would have to pay monthly bills and his retirement pay plus his SS and VA disability would just about cover it and my smaller retirement pay would have to be stretched to cover the household bills and taxes etc. So I might not have to file for bankruptcy but sure won't have much left...the good news is my house and cars are paid in full..so all there is are the property taxes. Maybe I'll make it.
I forgot to add....we too planned for the after the work world routine for the rainy day and for some trips etc...finally get the kids out of college, get our house paid for and then AD moves in like a case of bad termites that won't go away until the house falls apart..the AD termites are made our fun years vanish too.
Wolf, Your epiphany is remarkable and sometime ago there was a discussion on asking for help when we need it. What is sad for some of us is that when we have asked these same friends still have cotton in the ears. Now I face a real threat that my step daughters are not going to be able to come west to help as their mom is showing, what has worried me for some time based on their conversations about her, that she too has this dreaded disease. She has been on Aricept for maybe 3 years...she had something of a neck injury and has seen a neuro for that but her primary put her on the Aricept. Now her spouse is telling the girls he needs a break..she has been "following him around and asking the same questions 800 times a day"...earlier I would hear how forgetful she is and how fearful she is.....something is really wrong and I have a sneaky feeling it is the vicious AD striking twice. I hope they get a handle on this if the hubby won't. The girls are more than willing to come out and help and they have, but that may not be something they can do in the future. So that puts me back at square one.
I should have realized this had been discussed before but I didn't see it going back numerous pages. The hardest thing is having asked everyone and not getting any help or worse not having anyone to ask. The burdens facing me are just as real as they were last week and in your post the girls are more than willing but may not be able to. Even though there is no solution right now you are not alone either.
I will likely have to sell our house and live much more frugally than I already am. If my wife hangs in there in LTC and she's just 58 so the body is strong enough - I may face extremely tough times.
But if one other person is in the same funk I was and asks for specific help and gets it I'm satisfied this story is worth telling.
There's more to this. I'm not going to react when I hear the sighing or hesitation on the phone when I ask. That's normal stuff. And I may not get the help I want. But I'm not alone anymore in this and I was sure I was. That's worth something even if it doesn't solve the main challenges.
Wolf, I got a note today from a GF who took care of her mother who suffered AD..mine did too so for a time we compared notes etc. Then my mom died and Kathy was still in the battle. She said today that but for a couple of friends, albiet long distance, she would not have made it. So while I have slim pickins right now to ask for help, there is the support network on the phone and internet.. The thing that is irksome is the friend who says " let me know if I can help" and when you do ask for a favor ( and I don't mean wear them out requests) they are just too busy or whatever..Even if they can't come to the house or take him out for a lunch, just a phone call would be nice. DH used to make the calls..but doesn't now unless I urge him and even then he might not...but for these people not to get it... When I leave to run errands, I always tell him to be sure to take a message if anyone calls and wants to buy one of my photos..and they are 100,00 a print...he laughs at that and no one has ever called but it is a joke he does remember..well yesterday I called and tried to disguise my voice and ask about the prints only to hear him throw his head back and laugh a good one...it was pretty funny. Truth is, if anyone did want one of my prints that would be just about what I would charge if framed.
It is so hard to ask for help. I do find that it helps to be outspokenly appreciative when help is offered or given, and I can try to express how much it has meant to me. DH's middle brother and SIL live 15 minutes from here, and they are supportive in spirit but we haven't seen much of them. Last week they invited us for a visit and I expressed how very much I appreciated having somewhere to go that day. Now she said: Call whenever you want to come or want us to come over. It turned out they didn't know whether I needed the company or was avoiding it! So I am going to try to use them as an extra resource for filling time. I have three days day care and don't need respite but we need social contacts on the days when dh is home. My SIL even gave me a hug -- I think for the first time ever. DH's family is not very huggy.
I have never been able to ask for help, because I always got turned down. Even now, when I occasionally ask, the answer is still no, with lots of excuses.
HINT: Keep a list of things needing doing--big, little, on-going, one-shot. Whenever anyone gives you the "Let me know if I can help"--ask them to pick something. Stike while the iron's hot and get a irm comitment. If they still wiggle off--inconvenient, whatever--at least you'll know. You are no worse off if you get turned down, but it's amazing what can get done when you make the effort to ask.
I can remember a time when I really did need the help but was too tired and beat down to think of asking. Noone stepped forward then either.
I was told by his daughter-in-law that if I needed help, just ask. Unfortunately, my experience with that type of statement is that it is just words so I won't ask. We were also so independent that we did things ourselves and just did not think in terms of asking.
Looking back now, I realize that I should have asked very early on for a commitment where they would come and help with their father on a regular basis to give me a break. If I had had the proper rest, maybe I could have kept him home longer. It is very hard to make good decisions on 3-5 hours of interrupted sleep a night.
Carosi - you have mentioned making a list in other posts. While I didn't know about or think of doing it when things were at their worst, I do think about it now and have passed that bit of advice along to others - having that list is a great way to allow people to choose what they want to help with.
Lists. Live by 'em. My lists have lists. And... if someone starts pestering you about stuff that isn't done yet---"It's on my list." They just don't know which one.
I have a post script, a sort of an alrighty then to share...I went to the monthly ALZ Mtg today and as I left I told my DH to take messages and remember that if anyone wants one of my prints they are 100.00 each..( this is a sort of joke we have and he actually finishes the phrase as I am getting ready to leave.) Then when I got home he chirps up with ' You had 4 calls for your prints but I turned them all down..told them the price went up to 200.00 each. They are worth more than what you are asking!" Now that was a surprise and of course no one called for a print...
When we first met, we were in the O'Club...it was Friday Happy Hour. I was with a friend who was getting out of the service so we went for a boy voyage toddy..Down to my end of the bar he comes and leans in and says " Hi, my name is A.O. You'll like me." Well I thought he was a machere so I left...but as he says " I was right!" This morning he comes out and says " Another beautiful day in which to plot the downfall of international Communism." Other mornings he will say " Ah another beautiful day..the sky is yours." ( he was an attack pilot and flying has always been his first love and Hemmingway said" if a man loses he virginity to a lovely airplane, there his heart will ever be". His second love was "Looking for the Yellow Metal" (meaning gold prospecting) and somewhere in the mix I fit in!
One of the things I learned was to say yes when someone offered to do something. Just learning to say yes is pretty hard. I also learned to say thank you. The more I said thank you, the more people offered help. That was pretty hard too.
Well, I've done it. I made the call to my BIL to ask for help. It took a lot more to make that call than I imagined and it helped that he wasn't home yesterday and I got myself prepared so when I called the second time an hour ago it was just a bit easier.
Yes. They're going to take my DW on Tuesday and then once a week and they promised I could count on having the weekend in september so I can go on our 36th year of the boys weekend. Just like every single person they expressed frustration that they've been saying 'let us know if we can help' and I never gave them something to do and never called them on it.
I started this topic by saying I was so frustrated with everyone around me that they weren't helping until I finally listened to one friend even though they were all saying it was me. I was so positive it was them. Now I heard just how willing my BIL/SIL were and I've finally got some help.
I know that if I was doing this (and I was) and it was this hard even when I finally got it and talked to my other SIL down in California to see whether she thought her brother would/could help and got a resounding yes. When I dialed that number I was extremely hesitant. Even though I knew he would say yes it still took a lot to make that call.
I'm sorry for those that have asked and been turned down. That's how I would have answered a few weeks ago. That I had asked and been turned down. I was so wrong. I just had to really ask and ask for something specific and the biggest thing - I had to actually do that instead of just sending out signals.
Joan started a topic about a list of things. I urge anyone in the slightest doubt to pick one of those things and call someone and ask them to do it. I have no doubt some will be suprised. The hard part is picking up that phone. And that proves it's us. Because my BIL thanked me for letting them help finally. I just couldn't have been more certain or more wrong.
As hard as it was, don't you feel good about it now, Wolf? The next call will be easier. And keep in mind the asking opens up the opportunity for that person to do something that makes them feel good too. Once I figured that out it was easier yet to ask for help when I really need it. It is not a negative to need help, nor to ask for help. Denying help when you need it is negative (and dumb). Learning to say "Yes." "Thank you." "This really means a lot to me." can open your life back up in many ways. We need to do this. It's a survival skill.