Sandie

[Guest guest]

Sandie,

My condolence to you and your family. Your uncle is at peace now. I

hope your many fond memories comfort you and your family.

Lynn

[Guest guest]

Hi,

I just finished posting another message. Tonight's visits wasn't as good as

I thought. She was tired, a little vague and didn't want to talk. Just after

telling everyone she was doing good. Tonight was not so great. Oh, the changes

are awful. I'm sad tonight and feel bad, because I'm going out of town for a

little vacation and rest. Now I feel bad for leaving. My husband is kidnapping

me and taking me away. He's a good guy and is looking out for me but I feel bad

leaving. I'll be calling home everyday but it will ease my mind... Good Night

and thanks for all your letters. You help me very much... All of you help me.

Thanks again. Annie

Sandie wrote:

Hi Annie-

I noticed you had went through a type of process to get to

the more calm side of dealing with LBD. I think the same

happened to me. I remember going to my dad's apartment

several times a day 'fixing' what had mysteriously broken.

I would take meals, and check in on him - often! I was

married with 3 kids, 2 jobs, 3 cats and a dog. It all became

very taxing on my nerves. Something had to give. I, too,

got help and never regretted that. Also, my inner faith is

the only real explanation for getting me through some real

struggles with LBD. My brother wasn't supportive with

dad and dad's 2 brothers didn't see him much either. So,

it was dad and I. Again, I have no regrets for the time I spent

with dad and all that we went through. On the day of the

funeral my brother gave me the most beautiful Thank You

card and words that are priceless. Of all my memories

and experiences I know that we go through times in our

lives for a reason and a learning experience. Some times

we know what that reason is and other times we never

figure it out. I do know I am a more compassionate caregiver

after living with LBD in my life.

I am so pleased that you have your faith and that you have

come to that calm state of caregiving. Sure, there still

may be days when stress is higher, yet knowing that that

too shall pass helps to make it through to the next day.

As always, this group and all I have met through it are

in my thoughts and prayers.

Once again, hugs from Iowa-

Sandie

-- Re: Hi. Steve and Kathy...

Hi again, Just to answer your question. Sorry it took me so long. Mom had

a spinal, she was not given anesthesia. She was given just something to

relax along with the spinal... Putting them under anesthesia is worse, it

makes them more confused. She is doing even better this week. I am so

surprised and happy. I saw her walk today, with a walker but it's better

than not walking. She doesn't seem to mind me coming and going, she has

seemed to accept the fact that she has to stay there while she is healing.

That's what I tell her. I say, " Mom you have to heal and walk, so let them

help you and everyday you will get stronger and stronger " She just say, " OK "

and smiles and kisses me. Today I went to see her, put a pretty sweater and

pants on her, curled her hair and she looked great. It sure makes me feel

good anyway.

Kathy, it sure is hard to watch them and to see the lost look in their eyes.

And to not know you is so hard. I cried so much. But keep positive and

hopeful...Your Mom is in my thoughts and hopefully she will be fine. Also

watch the medications...... The pain medication does a number on them, it

keeps them really out of it. And remember, a person with dementia sometimes

does not need much pain medication because they don't realize that they have

pain. I know this is hard to understand but it's true. I'm sure they feel

the discomfort but can't really explain it to you. After a few days, my mom

was just on Tylenol if you can believe that.... Well, I'm so tired I can't

see straight. I'll write again. Let me know how things are.

Bless you and my Prayers are with all of you.

Love,

Annie P.

...

[Guest guest]

Thanks Friend, you just made me smile...

Sandie wrote:Annie-

It is totally fine for you to give yourself permission to take care

of yourself, and take time out for you!

You go girl!! Go, enjoy your time, and know that you can get

back to caregiving after your time away.

Smiling here for your decision of taking care of you!!

Sandie

-- Re: Kathy and Friends........

Kathy,

I just left the Nursing home. And after telling you how much better

she was doing. Well, today she seems a little vague and not talking. I was

kind of depressed when I left. She didn't eat much of her supper and she

didn't seem to want to talk or anything. I only stayed an hour and cried

when I left because I'm going out of town till Saturday and I feel like I'm

abandoning her. It's not true, my brothers are around and she is in the

best of hand. But it's my feelings. I'm not feeling so good right now.

For the first time she said, " See you tomorrow " and she won't... I cried

all the way home. What I'm doing is taking a little vacation to rest and

now I feel awful for thinking of myself. This is not like me at all. I

always put myself last. That's how I function better. This time I said, I

m taking a break and tonight I feel depressed. Oh well, I'll try to enjoy

and relax........ But My heart is heavy. Nite to all. and Kathy you are Ok

See you later.

I'll write next week..... Nite.

Love, Annie

STEVE & KATHY WARD wrote:

Sorry, I hit send by error. I went to see mom this a.m. and she was more

with it. She hadn't had morphine and recognized me. She was hallucinating a

bit, and had balled up her blankets. She was fingering them and telling me

that they hadn't fed her for 4 days...I told her that I gave her food but

that she was pretty " out of it " from morphine. I gave her a pudding that was

left on her tray and she ate it all. She also had a piece of chocolate. I

gave her a protein drink and she had a few sips. The nurse came to turn her

and wash her and I left the room because i didn't want mom to act up and I

really didn't want to hear her yelling...when I came back after a half hour

she was in the same position. The nurse said someone had to go, so she had

to leave the washing and was going to do it now. I went out into the hall. I

hated to hear the yelling that was going on, but at least mom couldn't see

me. In the end, she didn't seem to be in a much different position than

before but

she had clean nightgown on. She seemed tired and I decided to leave. I had

been there since 10:30 am and it was after 12 noon but I didn't feel like I

was with her very much. Oh well. My uncle (her brother) was going to see her

at 2:30 pm. He called at 4 pm to say that she was really " out of it " . She

didn't remember me being there. He said she was falling asleep and

hallucinating and didn't really know him. He told her he would come again,

and she said " yeah, that would be good, why don't you visit me more often? "

I felt bad for him but I am still not sure if she was clearer than yesterday

as he doesn't really have a reference. I was not going to visit tonight as I

have to pick up my daughter from a school trip and I am going tomorrow

morning. I do feel guilty, but on the other hand, if she doesn't even know I

am there, I might be better staying home and gettting the rest. She does

have good care there and I know that I have to pace myself or I will crumble

into a heap.

She didn't get any more morphine today, so I don't know why she was so " out

of it " when my uncle was there. I am keeping my fingers crossed that this is

temporary, from the trauma of it all. It is all so sad.

I appreciate all the prayers and support from everyone. You guys are the

reason I am able to keep going...

Kath

STEVE & KATHY WARD wrote:

Annie P wrote:

Kathy,

Hi again, Yes the morphine kept my Mom Loopy also... that really bothered me

She was not on that very long. Vicodin works better. They tolerate that

better. And you mention Reminyl, Oh my goodness that didn't work good with

Mom at all. I had her taken off that. But everyone is different. These meds

work so different on each person. If it's good for your Mom, then that's

great. Right now my Mom is on Seroquel and that seems to be just fine. I

think that your Mom will come out of this increased confused state. It's the

surgery and everything that causes this increase. And morphine is horrible

for them. Give her a good week and she should be different. It took my Mom

about two weeks to finally wake. She wouldn't open her eyes or eat either.

Scared the hell out of me. And I was like you, I didn't want to leave her

just Incas she woke and looked for me. I was there constantly. But remember

Kathy, take care of yourself also. I go so run down and I

had a horrible cold, couldn't talk. I was so sick. But stayed with her.

Everyone was mad at me for not taking care of myself but I felt Mom needed

me. After she was better I took some time to rest. But I had this horrible

cold for over three weeks. I'm still dragging a little. Anyway that's passed

So just remember, One day at a time..... Keep me updated, I'm here not

everyday but I try. If one message I write helps someone, I feel so good. I

know many messages here have helped me so much.

Take care and have a great day. Love, Annie

STEVE & KATHY WARD wrote:

Hi Annie

Thanks for your reply. They have mom on morphine and she is pretty loopy.

They have taken her off Reminyl and that worries me too. Last night she was

a little more with it than yesterday afternoon. She didn't remember my

sister being there at all, nor the fact that I had been there before then.

She could hardly speak as she was mumbling and her teeth were floating

around in her mouth. Very frustrating since we couldn't understand her. She

is not eating much just a couple of bites here and there but is on IV so I

guess it is okay. They gave her blood because her hemoglobin was down. It

feels useless to be there, but yet who knows when she will be coherent and I

don't want to not be there if there is a chance she needs me.

Kath

Annie P wrote:

Hi again, Just to answer your question. Sorry it took me so long. Mom had a

spinal, she was not given anesthesia. She was given just something to relax

along with the spinal... Putting them under anesthesia is worse, it makes

them more confused. She is doing even better this week. I am so surprised

and happy. I saw her walk today, with a walker but it's better than not

walking. She doesn't seem to mind me coming and going, she has seemed to

accept the fact that she has to stay there while she is healing. That's what

I tell her. I say, " Mom you have to heal and walk, so let them help you and

everyday you will get stronger and stronger " She just say, " OK " and smiles

and kisses me. Today I went to see her, put a pretty sweater and pants on

her, curled her hair and she looked great. It sure makes me feel good anyway

Kathy, it sure is hard to watch them and to see the lost look in their eyes.

And to not know you is so hard. I cried so much. But keep positive and

hopeful...Your Mom is in my thoughts and hopefully she will be fine. Also

watch the medications...... The pain medication does a number on them, it

keeps them really out of it. And remember, a person with dementia sometimes

does not need much pain medication because they don't realize that they have

pain. I know this is hard to understand but it's true. I'm sure they feel

the discomfort but can't really explain it to you. After a few days, my mom

was just on Tylenol if you can believe that.... Well, I'm so tired I can't

see straight. I'll write again. Let me know how things are.

Bless you and my Prayers are with all of you.

Love, Annie P.

STEVE & KATHY WARD wrote:

Wow. I just read your post after writing mine. I guess there is always hope.

I will keep your mom in my thoughts as my mother goes through the surgery. I

pray for a similar outcome in that my mother may return to the state she was

in before surgery. I don't want her to not recognize me or anyone and be

scared. Your post makes me think that there might be a chance, and for that

I am grateful. It is doubtful she will ever return home but if she can get

back some functioning perhaps her life is not so doomed after all. Did they

give her a general anesthetic?

Thanks Annie.

Kath

Annie P wrote:

Hello everyone,

It's me Annie again. I have not written in a while. I have been so busy with

work and visiting Mom at the Nursing Home. YES, she is there. After breaking

her hip on New Years Day, she had to go to rehab. I felt just horrible

sending here there but have no choice. The first week in the hospital and NH

was hell. I thought she would never come out of the state that she was in.

She was not talking or opening her eyes or not really responding to anything

She had to be fed and it was like a nightmare. She was put on Seroquel and

one day she was awake like I've never seen her. Now she is doing better,

walking with help and talking, eating good and just back to the way she was.

She does ramble on about things we don't know what she is saying but at

least she is back with us. I know some of you say that medication is not so

good, but for Mom it's working for now. If we have to change it later we

will. She did ask once to come home but she hasn't again. She has the

rehab for about three months and then after that we will see. I'm wishing to

take her home, but other family says not to. If she is content there, they

said I should leave her there. It is a lot easier on my family and we were

talking a beating in this house. My kids were upset watching her. She needs

constant care and it's hard on all of us. Plus it's not fair for the kids to

see this. They are not babies the are adults but they were each taking it so

hard. Their Grandmother lived here for 17 years and they are very close to

her. We'll see what happens. I had a very hard time watching her suffer from

the fall and slipping into a state of nothing. That scared me so much. But I

feel better now. I'm there with her as much as I can and I feel better

myself. Well, thanks for listening again to me.

We are getting buried in snow here in Massachusetts, it doesn't seem to want

to stop. I love it though. Night to all, Bless you..... Love, Annie P

Annie

---------------------------------

Do you Yahoo!?

Yahoo! Search presents - Jib Jab's 'Second Term'

[Guest guest]

Hi Sandie

yep I am trying to see that there will be a good outcome and I will look back

and say wow good thing that happened...she is in there for another 7 days at

least...more if more people get sick. Two more were sick yesterday so no moving

mom. She did move actually. Across the hall because her bed wasn't working

right and they found out it was because some of the air tubes had come off, from

trying to manouever the geri chair and bumping the bed with it.

I have accepted that she is there for however long but that she will eventually

leave there, either to the new place or to heaven. I will do my best to work

things out with the staff and try not to get so upset about everything, but

instead ride the tidal wave to shore...

I have brought in a tv with a vcr and some movies but there is no plug close (of

course) so I now have to buy a power bar and extension cord to get her set up. I

am going on my last field trip today to " Wizard World " , a little amusement park

with magicians and various other entertainment for kids. It should be a good

day. I have gotten a reasonable amount of sleep last night and my son is

coming home from Windsor today. I can't help being happy despite myself (ha

ha!)

I am going away to my trailer overnight on Friday and will return Saturday

afternoon sometime. My sister has said she will visit mom one of those two days

so I will take a day off and rejuvenate myself. I am determined to forget about

the whole business and try hard not to worry about mom all of the time but

instead talk about other things and make some new memories.

I miss my daughter who I didn't see tuesday as she was at a friends overnight

and then she returned on wednesday during the day got her stuff together and

left for another friends cottage in Muskoka. I feel sad I didn't get to say

goodbye to her. She will return Saturday and we will have a big family dinner

on Sunday with all of the children and their signifigant others and has

asked if Cassandra's mom and siblings can join us as well. It will be nice to

have everyone together but sad that mom can't be there. I have yet to work out

in my mind when I am going to go see her.

Monday is a day off for me so I am going to do something for myself. I am going

to go to the casino with Mily whom I work with and hopefully have some fun. I

will get back to the worrying on Wednesday as there is plenty of time for that.

I wish you and a happy Easter.

Kath

Sandie and Pearce wrote:

Hi Kath-

Remember with all your might...these things happen in their

own time for a reason. I know the frustration you are feeling

yet also know there is a bigger picture that will best suit your

mom when the time is right.

Thinking of you-

Hugs-

Sandie and

-- Re: Re: Please no more pain

Still no move. This morning I went to Versa Care to wait to see if the

outbreak was over. I had not heard from the True son manager either.

After 9 am they were still " looking into it " . Then Greg phoned from True

and said that she couldn't move today because they already had too many

coming that day. He said they could accomodate her on Wed. morning. Then I

heard from Versa Care telling me that there was another resident with

symptoms " but it may be an isolated case. I now have to wait until tomorrow

morning when they (public health) will then decide whether to lift the

quarantine or not. They did not want to book another ambulance " just in

case " because they have already had to cancel two. My only choice is to

wait and see if it's a go tomorrow morning and then pay for an ambulance

privately.

At this point I just want to get her out of there. I am hoping (and at the

same time trying not to hope too hard) that tomorrow will be a go. If it

isn't then it will be another 8 days before the all clear will be given.

Kath

Donna wrote:

Kath,

You are doing a great job. Just keep hanging on! My thoughts and

prayers are with you.

Donna P.

>

>

> Hi Kath, sorry to be posting to you so long after yours but I have

> only just now signed on and I had to respond to you.

>

> We all understand the pain you are going through, each and

everyone

> of us. It is perfectly normal given the circumstances. We turn

> ourselves inside out trying to make sure we are doing the best

> possible job on behalf of our loved ones, and it never seems

enough.

> I am sure there is not one person on the board here who hasn't

second

> guessed themselves more than once.

>

> Whether you care for your loved one at home, or that loved one is

in

> a care facility, we all feel the pressures and strains of making

> decisions on the spot, answering to others, maintaing families and

> lastly looking after ourselves. You have every right to rant and

feel

> helpless at times, you have earned it.

>

> You did the absolute right thing in coming here to unburden your

> feelings; we can and will offer the support you need. Just

remember

> that you ARE doing a GREAT job for your mum and that you are not

> alone. You always have us, for the invisible hugs, the silent

prayers

> for strength and the written support in lieu of face time.

>

> I truly hope that everything worked out for your mums move to the

> son (?) place. Our mum was in an Extendicare in Brampton and

we

> were so happy to get her out of there. Now she is happily settled

in

> Woodhall (also in Brampton) and our worries are fewer.

>

> I wish you peace and hope, and that you never feel that you can't

> share your feelings, good and bad, with us here.

>

> Take care,

> .

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>