Dear Fellow Caregivers,

Don't you also find that the care of a dementia patient is made so much harder by the lack of good communication? I still keep on falling into the same traps (yes, set by myself unwittingly.)

Yesterday Mom had her appointment with the Podiatirst. When she and Esther returned, I said, did you tell him you won't be in Astoria any more for the next appontment? "Oh yes, I told him I would be on vacation in July, and I would call him when I'm back." well,that's close enough, the main thing is that we don't get billed for a missed appointment. Well, this AM when I put a few more dollars in her wallet, there it was: an appointment card for JULY 13!

When Mom got up I said "I am gong to have to call Dr L becuase you won't be here in July. I thought you told him that, and did not make an appointment.''

Immediately the excuses and stories poured out.

" I made an appointment anyway because BILL said I should, he said he will drive me to THIS doctor."

Then, "I asked him NOT to give me a new appt but the nurse gave me one anyway."

Then, "I told him I would be bACK from vacation by then.''

etc.

I kick myself regularly, saying, why did you even ask her anything? I should have called the Dr myself and made sure they know the whole story!

This is just one tiny example of the loss of meanngful communications.

Yesterday Mom's aide was talking about caring for her own 85 yr old mother at home. My Mom says "One mother can care for 11 children, but 11 children can't care for one mother."

"But Mom, Esther IS caring for her mother, and I am caring for you and Bill will soon be caring for you .."

But "yes, so it is. One mother can .. but 11 children can't ..."

Frustrating!

Hang in there everyone ..this too shall pass ..

Love,

Martha

Oh Martha, I soooo much know about withholding info and just plain not discussing things with my husband---in the beginning I felt really bad--like I was lying to him or something, but have soooo learned that if you share some things--it turns into a nightmare. He has no concept of time or date so if I told him such and such is coming, he was like a little kid--their visit was probably a month away but everyday, 10 times a day, he would say oh so such and such is coming and I would say yes honey but a month away. But the next day we would go thru the same thing. I understand perfectly about the doctors appt with your mom, I tooo fell into the trap, but have since tried and tried not to open my big mouth and say anything, I just take care of it--much easier--but hard to do..

But I sure understand

Linda

Thanks Linda ..that's what is so great on this Board; people know exactly what you mean. Outsiders say , well. that's a small thing, don't get in an uproar over it. Multiply it by 20 x a day ... and it's not so easy!

Love,

Martha

I understand too. And the stories being told a hundred times a day. Oh gawd...do I understand. I've learned not to tell dad anything about someone coming to visit until the day of the visit. And as far as doctor appts go, I'm the one who has to take him so there's no communication gap there.

Here's what still gets to me from time to time. Someone calls the house and asks for dad. He's usually in his bedroom so I tell him to pick up the phone in there. If his door is open, I can hear him saying things like "Yeah, I think I went to the doctor but I don't remember what he said." His doctor is a she. And if it's my brother or sister on the phone (brother who lives in Chicago, a 40 minute drive from here and has visited dad ONCE in 7 years!), I hear dad telling them "She did" or "I don't know if she did" or "No, she didn't" or whatever. Since I'm the only she in the house besides the two dogs, I'm assuming they're talking about me. Now if these people had questions about what I'm doing or not doing, why not ask me when I answered the phone? My sister will talk at length to me but my brother always says "Yeah Barb. Is dad there?" "Yeah." "Could I talk to him?" ((((thanks for asking how I was)))). Ya know?? And these people believe everything that comes out of dad's mouth! My sister's in Alabama but she sees dad and talks to him more than my brother in Chicago. The last time we saw him was by accident. I took dad to the hospital (that's where his doctor's office is). We saw my brother in the cafeteria. Talked to him for like 5 miinutes when he had to go. No job or anything. Just rushing to get home to his empty appt or his booze.

Anyway, way off the subject here.

Love, Barb

Oh Barb yes. Phonecalls. It is crazy making. When my sister calls every 3 or 4 weeks it's always "I went here I, went there, I saw so and so, I had a great time, we ate with Bill and Anna, David called, Ann is sick, Jane had an accident. Let me sing you a song, let me tell you a joke. Then the other person thinks WOW, she is in rare form; no matter if the joke makes no sense ..no matter that Jane died two years ago and no one has heard from Ann ... it's just yak yak yak.

Then: Oh yes. SHE said. She did ... She wants me to ... NO I can't because of HER... (it is either me or her Aide, probably me, all the negative stuff.)

Before I broke off communications, I would then get an email report on the conversation as if this apartment were big enough so I didn't already hear every word. Mom said .. Mom was so sharp ! Mom is doing so well! Glad you all went out together. (we didn't.) Glad she heard from Ann, etc etc.

I used to send a play by play 'refutation' but gave up. One time she answered, literally "So what if MOM GOT all the facts wrong! the main thing is that she FEELS happy, enjoyed the week etc."

So what if you only call once a month? So what if you don't know what is going on in her life, because you don't ask the only person who knows?

Sorted out more stuff. I think I know why Elsie and I don't get along. She was the firstborn and likely loved more than the others. Bill was the only boy. I was the middle child, an unwanted second girl.

I felt it, and later was told that Mom tried to get rid of me.

I see it again today in the mountains of papers Mom saved. Elsie's report cards. Elsie's graduation pictures, Elsie's wedding pictures. Elsie's children. Elsie's invitation. Elsie's news clippings.

One of my report cards. None of Bill's.

I have to admit that as a mother of 3 kids I also had huge stacks of pictures of the firstbron, half as many of the second, and a few of the third ...but .. I have probably felt jealous of Elsie all my life. That may explain why her 'normal' negligence of Mom is so painful..the best loved child does the least but does not lose her position, while the unwanted one does the most and is not loved more because of it. This is a 6 year old child speaking. Will the real Martha please stand up! Oh there she is - she knows all this is not true. It's just a child' s feelings. Mom loves us all equally. I just annoy her most becaue I am here and she is dependent on me!!

Love,

Martha

Hello friends,

It's my 1st birthday without Mom and it's so odd. She had not been "with it" in 3 years, but went along with the party spirit and even was delighted with the birthday song last year. She's been in my thoughts so often today. I do miss her. As I look up from my computer, I see her wedding picture and I wore her wedding dress 33 years and 6 days ago. Right now I'd even like to see her in her wheelchair and out to lunch mentally as she was that last year. I'd most like to see her about 5 years ago when she loved to dress in bright colors, loved to see her grandsons, loved the quilts I made for her, and loved her little, but beautifully decorated home. Sigh.

I know everyone here can relate to missing the mom or dad they used to know. Do hug them now while you can (Sally, if you dare get that close!).

God bless us everyone - Barbara

Happy Birthday Barbara,

Just in case you aren't aware of it, your help and advice has kept me sane these last 5 months since I got on the Board! I appreciate you so much.

Love,

Martha

Martha too true, I think I told you I lived away from home when my mom was sick and on dialaysis my sister bore the burden, but "i" was the golden child, my mom would tell my sister everyday how great I was and yet I was doing nothing for her care--I lived 2,000 miles away. Thank goodness my sister and I maintained a good relationship, thank goodness I told my sister constantly how much I appreciated every thing she was doing for my mom. And yes you are right--I was the "baby" of the family, so it is true. However I also think I told you that a social worker told us, the primary caregiver is the one that gets all the sh--, they are dependent on them and hate the fact that they are. So it is just something one has to live with. Be happy and content with yourself. You did a very very good thing taking care of your mom, many would not. You are good people girl.

Barbara H. Sorry missed your post at first Happy Happy Birthday!! I agree I lived away from both my parents most of my life, so not always there. Miss them both muchly. However life goes on girl, go for the gusto!!! Is that a cliche or what? Love you girl, Linda

Thanks for the birthday greetings, friends, we do keep each other afloat!

Hugs - Barbara :)

Ok .. you girls have been BUSY on the board while I've been asleep !! No fair !!

Let me Start with:

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Barb, Happy Birthday to you ....... and I back up Martha by saying THANKYOU for being my friend these last few months I've been on the board. I've said it before, and I'll say it again, it means the world to me that I have TRUE FRIENDS who REALLY understand my situation and have functional ideas and coping strategies. THANKYOU.

Martha .. I think I've come to the glorius level of understanding with my MIL .. I have disassociated from her and whatever words we do get,and I don't believe a thing that comes out of her mouth. The aphasia is the advantage I guess over your loved ones, because when MIL says "stra, thray, thring, around around" NOBODY ELSE can even BEGIN to try and translate that and twist it around .. LOL

I do believe I might have just got it right with my kids too .. well .. 2 out of 3 anyway. Cameron will always bear the brunt of being the oldest. Being the ONLY boy and boy grandchild and he will have to pave the way for his sisters. Bummer being the first. Tamea is our 'middle' child, and she's my little rock. She's dependable, mature (most times) and trustworthy. SHE wasn't our surprise baby, she was our planned one!! SHE was the one who breastfed perfectly, SHE was the textbook baby. I didn't have Post Natal Depression with her as I did the other two (unplanned surprises). Brianna .. well, she scared me. I spent 9 months of the pregnancy saying "I don't want to do this, I don't want to do this' and when she came out not breathing and having to be resucitated, and almost dying at 7 months with kidney problems .. I found I did actually want her. So she's my baby girl. It's such a pity discovering that you weren't wanted, and I don't say anything to Brianna. That would be just too cruel. I suppose, since I am adopted (10 days old) and have no idea (or wish) to know my birth parents, I have a bit of empathy floating around.

Anyway, communication gap is an understatement here. FIL refuses to acknowledge that just because HE sits on his bum doing nothing but think, the rest of the world is busy and functioning and we don't need help keeping busy (well, I don't anyway). MIL is just useless in everything now, I don't mean to be mean, but she is!! She creates SO MUCH MORE work .. cleaning, washing, laundry, food .. it's just pointless GIVING her a job to do because I have to fix it and then she get's cranky and it just get's nasty.

Give her a hug? No way ........... LOL

And .. it's almost a year since my Daddy died .. I'm gonna be even more fragile soon I think .. I want him back so bad .. so I know how you feel Barb ... The first Fathers Day without him, the First Birthday he's missed, the First christmas, the First Anzac day ...

Anyway .. I'm getting maudelin ...

Hugs
(Cause you guys can't hit me LOL)

Sally

Sally, I do not know you or your situation very well-but can tell you are on a major guilt trip and that is not bad--as long as you do not let it consume your life. I meant to email you and tell you your letter was great to your FIL I also just wanted to say, we are here for you girl, I do not always respond to this board cuz my hubby is like flypaper on me, but when I get the chance to read and look I know all of you are very very good people. And that is the good part we all do what we can when we can, but there comes a time when we have to step back. Good thots to you Sally

Thanks Siesta ..

I haven't given the 'letter' to FIL as yet ...... I'm working up to it. He rang me this morning and reminded me he wants to talk to me ............... alone ............. I hate that .. LOL ... my first instinct is to RUN AWAY (insert Monty Python type voices here), but I might be able to handle it if he transfers hospitals over the weekend. At least we'll be in a private room. I might reword it a little .. no .. probably better off not to. And yes, major guilt trip, it's easy to say "no guilt" but it's hard to stop y'know?

Siesta, if you want my full, no holds barred story, go back and find one called "Epic Saga, get your coffee ready" .. I understand flypaper, MIL get's like that when she's suspicious that we're 'up to something' .. Gawd knows what other than getting away from her LOL .

I've said it before, and I'll say it again (i sound like a broken record), this board, and all the members are my salvation, there is almost always somebody not too far away who will empathise with me, help me vent, give me coping strategies and cry with me. Pity the family can't eh?

Stepping back, slowly slowly is my aim at the moment. FIL can sense it. I'm deliberatly unwilling to be helpful 'at times'. I'm quietly putting my foot down. I'm discovering that if I give FIL LOGIC .... I can't do this because........... he's ok with it. Sometimes he even says "oh .. yeah .. that's true" ...

I do believe in his weakened state, that hypoxia (sp?) is settling in. Even though his 94% saturation average is "ok" .. that's just numbers. It's not telling us how MUCH O2 is getting INTO the brain .. so I do think Oxygen starvation dementia is a possibility. At least he has words!!!!

Anyway ... gotta run .. MIL is up at the hospital and I have a chance to take some pain killers and do some laundry ..

Oh happy day .. LOL

Hugs
Sally