a day in my life

[Guest guest]

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

Hi ,

What you say all rings so true. I have been where you are. I struggled through

each and every day. I thought I would be 6 ft. under before my dear husband. I

was trapped in the house, couldn't get out to go grocery shopping, my husband

could no longer figure out how to drive the electric grocery cart, he was

delusional when I left the house that I was going to meet my lover. I had to

learn to ignore the comments. I knew they weren't true and we needed food. I

called in the caregiver, so I could get out and grocery shop, but there was a 4

hour limit, so I had to fill the remaining hours with other things to fill up

the 4 hours and extra pay that I didn't need, but had to do in order to get out

to shop. I ordered groceries online and that soon became an expense too. It was

very hard, but my husband died in January of 2011, and if I could have him back

I would do it all over again, because as the time went on, it became easier.

When I thought I had it

hard, it was even harder down the road, so in reality it never was as hard as I

thought it was. But at the end for me anyway, I would do it all again if I

could. I understand your wanting it all to end together, but now that I have my

life back, I pray that Mayan 2012 thing or the Rapture doesn't happen. I have a

life again and I am living it. I deserve to have a life, my  husband had a

wonderful life before he was ill. I wish everyday I could have him back to enjoy

life together with him, but that isn't the case, so I am moving forward and I

pray that you can too. I know you can not see the light at the end of the

tunnel. I was there, everyday was a struggle. I couldn't get my husband off the

road to quit driving. I had to go through He-- to get him off the road. I could

not sell the car, I needed it to get around. I suffered sleep deprivation every

night and was attempting to work a full time job with a caregiver in the day

and released when I got

home Everyday was a challenge to meet. I felt like I was in Tribulations too.

But I am here to tell you, there is a tomorrow and this too shall end and there

will be light at the end of the tunnel for you to see your way.

Hang in there, don't give up. See every day as lemonade. " When life passes out

lemons, make lemonade out of it. "

Please take care of yourself. None of us are here alone and that is the blessing

of this support group, that we found each other and know that we are not alone

in this, and it will give you strength to get through it, because it will end

whether you want it to or not and you can know what is coming, but you are never

prepared for it to really happen and you will need this group, but there is life

at the end and that is you, and you need to move forward.

Blessings to you,

Jan Colello

Husband, Jim, dx w/LBD Oct.2003, but showed signs of LBD in 2000

Deceased, January 22, 2011

 

 

 

Subject: a day in my life

To: LBDcaregivers

Date: Sunday, July 31, 2011, 5:35 PM

 

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

so sorry to hear this You may need aa

To: LBDcaregivers

Sent: Sunday, July 31, 2011 8:35 PM

Subject: a day in my life

 

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

Hi

As I care for my mom and have help with home health care aides it struck me how

much of your wife's care falls on your shoulders, is there any way for you to

afford some outside help or are there any other family members that can pitch

in?

From your description of a day in your life it is clear that you are in need of

respite- the literature on caregiver health stress is abundant with cases such

as yours - your health, physical and mental are key to your wife's continued

care and also for your well being !

In this group I have learned all too well that eventually LBD will take your

wife's life - we hope you will be well enough to continue living a full and

healthy life past this nightmare !

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@...

> so sorry to hear this You may need aa

>

>

> To: LBDcaregivers

> Sent: Sunday, July 31, 2011 8:35 PM

> Subject: a day in my life

>

>

> i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

> inhumanity-i will have lost. i sleep poorly now (how about you?) i had

headachs last nite,bad dreams, couldn't sleep. can't solve this problem. now i

think i am clenching my teeth/jaws together as i sleep..as if i am bracing for a

crash- no wonder i had a headache. finally got up, 11 am and did some yardwork(i

enjoy). highlite of the day was eating: wife likes waffles in morning, small

lunch and hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

>

>

[Guest guest]

,

I read your post with a great deal of interest because I saw myself in so much

of what you shared. Your wife must be very fortunate to have you with such a

high level of love, commitment and determination as her caregiver.

I would like to share a few comments that are totally non judgmental and based

upon things I have learned the hard way. First of all you raise

the dilemma debated by philosophers for all time.  That is the Problem of

Evil. I can't answer that, but many cultures and religions have addressed this

issue in depth. The sad fact is bad things do , indeed, happen to good people.

However, that is not one of my controlables. So I need to move on to address

that which can be effected.

We have all been with you in the various stages of grieving. After  4-5 years

of caregiving I find I flip between acceptance and anger. These emotions are

natural and vary as widely as the fluctuations of Lewy. Being a control freak of

sorts, I learned long ago, that as long as I will be experiencing various

emotions, I should make them work for me rather that allowing them to victimize

me. If fact, I don't mind when I feel angry as much as I did, because I use it

to motivate me to get up earlier, address issues earlier, exercise harder and

longer. 

I have also entertained thoughts of both of us going to sleep together and not

getting up. But, that would give Lewy the satisfaction of having

two victims for the price of one, so to speak.  Lewy is going to win. But not

without a fight.

These sites provide insight, suggestions, and support that I have found

invaluable. Many more have walked ahead of me and I try build on what has worked

for them and then adapt it to my situation. I do laundry everyday and some days

I would have to do 3 loads of bedding following a bad night. A simple

suggestion of getting a mattress cover from Walmart with pads on top have

reduced it to one load per day.  I could probably get by with less than that

but prefer to stay ahead of the curve when possible. 

I also suffered from fragmented sleep along with grinding of the teeth for a

very long time.  It intensified after the Lewy DX.  My dentist created a

bite plane for me that I insert prior to sleeping. It stopped the grinding, need

for frequent repair of fillings, and dramatically improved the quality of my

sleep, and hence energy level the following day.  I mention this only because

when we start to break off many of these issues from the main bundle, there may

be simple solutions to many of them.  Thereby, reducing your load.

I am not a counselor, nor do I purport to be. Yet it seems that, just like

we separate the disease from the patient, you may want to consider your needs as

separate from those of your wife. If your health and emotional needs are wanting

you are unable to effectively meet those needs of your LO. Its like trying to

quench her thirst from an empty vessel.  Trust me....been there, tried it. I

have found it very helpful for me to meet with a therapist several times a year.

I suggest that you may be more effective in the role fate has thrust upon us, by

affording yourself this potent resource. It could start with a clergyman, PCP,

Dept of Aging etc.

Caregiver burnout is so very common with an insidious onset. Seems you need to

seriously address your needs first.

I think from your post it is apparent you are sensitive that something has to

change.  The following might be appropriate:

" You may have habits that weaken you.  The secret of change is to focus all

your energy, not on fighting the old, but on building the new. " Socrates, The

Way of the Peaceful Warrior

I make these comments in the spirit of support and suggestions. Perhaps in

another year when my personal situation advances, I am sure my perspective may

change as well. Currently, my wife fluctuates between stages 3-4, often

leaning more towards the latter.

Good luck and God Bless

 

Jeff 

________________________________

To: LBDcaregivers

Sent: Sunday, July 31, 2011 8:35 PM

Subject: a day in my life

 

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

thank you Jan for your kind words. they help. you went thru 10-11 years and

survived. i appreciate your sharing your experience with me. that is all i was

asking for.  i am strong but even strong people just need a hug sometimes. it

seems that professional people are too objective too help. they are trained to

distance themselves- and in the end they aren't really there. i like real people

like yourself. i know where to buy a shovel, what a shovel is for,etc.  i just

need less supervision and more quiet helpers on the dirt pile. thanks for

helping me dig away some of the dirt-of this journey.  God Bless

You. .........gary

Subject: a day in my life

To: LBDcaregivers

Date: Sunday, July 31, 2011, 5:35 PM

 

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

Thanks for sharing your story. I understand the fleeting (not so fleeting)

thought of going to sleep with your loved one never to wake up again. It was a

scenario I played with several times in my mind. So simple and so easy and so,

so final. In the end, of course, I didn't. My husband passed away two months

ago and I am in the midst of trying to repair my life.

Like you, I was often angry at the " professional " staff who were so busy giving

me advice about waht I should do. As if I had any more minutes in my day to DO

anyting more. Like you, I needed help in the trenches and what I got was advice

to find an hour a day to pamper myself, to do exercises, and to attend group

meetings. I didn't have an extra hour in the day. I couldn't get out of his

sight. When he went to sleep at night I was too exhausted to eo anything other

than take a shower and get into bed myself.

No one who has not dealt with the day by day stuff of this disease has any idea

of what it is like. None of them have any right to give advice if there is not

concrete help offered.

The one program that actually delivered for me was a County Respite program.

The came and assessed our situation and after the in-home visit the counselor

said, " We can help you. We can pay for (with a $1.65 co-pay a day from you)

two days of Adult Day Health which was four hours a day. I dropped him off. A

bus brought him home, and I could count on 4 hours two times a week to go to the

doctor, the dentist,get my hair cut, go shopping, see friends, or just go to a

coffe shop and read a book. It was a gift of time. Best gift I ever got. That

was REAL help. I could have opted for 5 hours of in home care a week instead of

the two 4 hour sessions. Maybe there is something like that in your area. I

went through our local Area on Aging.

Good luck...come here often to vent. That alone is a lifesaver. This is the

hardest job you will EVER do. Don't let Lewy take you, too. Smiles, Nan

>

> i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

>

[Guest guest]

thanks jeff for the encourgement. it seems there are many more us us in the same

boat. i will picture you in my boat paddling with your oar on the other side.

that way we can go forward instead of me going around in circles, pulling with

just one oar?  gary

Subject: Re: a day in my life

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, August 1, 2011, 10:21 AM

 

,

I read your post with a great deal of interest because I saw myself in so much

of what you shared. Your wife must be very fortunate to have you with such a

high level of love, commitment and determination as her caregiver.

I would like to share a few comments that are totally non judgmental and based

upon things I have learned the hard way. First of all you raise

the dilemma debated by philosophers for all time.  That is the Problem of

Evil. I can't answer that, but many cultures and religions have addressed this

issue in depth. The sad fact is bad things do , indeed, happen to good people.

However, that is not one of my controlables. So I need to move on to address

that which can be effected.

We have all been with you in the various stages of grieving. After  4-5 years

of caregiving I find I flip between acceptance and anger. These emotions are

natural and vary as widely as the fluctuations of Lewy. Being a control freak of

sorts, I learned long ago, that as long as I will be experiencing various

emotions, I should make them work for me rather that allowing them to victimize

me. If fact, I don't mind when I feel angry as much as I did, because I use it

to motivate me to get up earlier, address issues earlier, exercise harder and

longer. 

I have also entertained thoughts of both of us going to sleep together and not

getting up. But, that would give Lewy the satisfaction of having

two victims for the price of one, so to speak.  Lewy is going to win. But not

without a fight.

These sites provide insight, suggestions, and support that I have found

invaluable. Many more have walked ahead of me and I try build on what has worked

for them and then adapt it to my situation. I do laundry everyday and some days

I would have to do 3 loads of bedding following a bad night. A simple

suggestion of getting a mattress cover from Walmart with pads on top have

reduced it to one load per day.  I could probably get by with less than that

but prefer to stay ahead of the curve when possible. 

I also suffered from fragmented sleep along with grinding of the teeth for a

very long time.  It intensified after the Lewy DX.  My dentist created a

bite plane for me that I insert prior to sleeping. It stopped the grinding, need

for frequent repair of fillings, and dramatically improved the quality of my

sleep, and hence energy level the following day.  I mention this only because

when we start to break off many of these issues from the main bundle, there may

be simple solutions to many of them.  Thereby, reducing your load.

I am not a counselor, nor do I purport to be. Yet it seems that, just like

we separate the disease from the patient, you may want to consider your needs as

separate from those of your wife. If your health and emotional needs are wanting

you are unable to effectively meet those needs of your LO. Its like trying to

quench her thirst from an empty vessel.  Trust me....been there, tried it. I

have found it very helpful for me to meet with a therapist several times a year.

I suggest that you may be more effective in the role fate has thrust upon us, by

affording yourself this potent resource. It could start with a clergyman, PCP,

Dept of Aging etc.

Caregiver burnout is so very common with an insidious onset. Seems you need to

seriously address your needs first.

I think from your post it is apparent you are sensitive that something has to

change.  The following might be appropriate:

" You may have habits that weaken you.  The secret of change is to focus all

your energy, not on fighting the old, but on building the new. " Socrates, The

Way of the Peaceful Warrior

I make these comments in the spirit of support and suggestions. Perhaps in

another year when my personal situation advances, I am sure my perspective may

change as well. Currently, my wife fluctuates between stages 3-4, often

leaning more towards the latter.

Good luck and God Bless

 

Jeff 

________________________________

To: LBDcaregivers

Sent: Sunday, July 31, 2011 8:35 PM

Subject: a day in my life

 

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

Jeff,

Well, I am a counselor/therapist, and can assure you that your point is

accurate. Where you seek a therapist CAN be important. For example, some

clergy are not equipped to deal with this issue. Some are. However, keep in

mind that typical clergy members are not trained for years in psychology and

therapeutic approaches and issues. SO, considering that, in some cases a

psychotherapist is needed, or perhaps a psychologist. And perhaps the clergy

person could recommend one that would be really appropriate...so I am not in the

least 'dissing' clergy! And if you try a therapist and they just don't get it

or have the skills in your opinion, first assess if you are evaluating them

fairly or if you are uncomfortable with some of the ways they are challenging

you, OR if they are genuinely inadequate. If they are inadequate, move on!

Don't waste your time or money. I regret the need to say it, but there are

plenty of inadequate psychotherapists out there, some woefully so. But there

are also some excellent therapists. If a person is diligent, and honest with

themself, the excellent therapists can be located in time (or on the first try

if you are fortunate!)! But it is critical to be fair about the therapist...is

the issue your own, or that they are not equipped to handle your issues

effectively. And therapy may take some time...there are a lot of issues

surrounding LBD for caregivers, and a person will genuinely feel so much better

and so much more purpose-driven if they can address those issues in a healthy,

caring environment.

I just wanted to add that, as a therapist. There is no weakness in seeking

therapy. There is actually strength.

Lori

a day in my life

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had

headachs last nite,bad dreams, couldn't sleep. can't solve this problem. now i

think i am clenching my teeth/jaws together as i sleep..as if i am bracing for a

crash- no wonder i had a headache. finally got up, 11 am and did some yardwork(i

enjoy). highlite of the day was eating: wife likes waffles in morning, small

lunch and hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

Lori,

Thank you for the fine point you make.  From my personal experience we are on

the same page. My communications skills were not at their best.  What is was

trying to communicate was that a clergyman, PCP, many of the support agencies

would be a starting point for a referral to the appropriate therapist.  

Thanks for the background  information your presented.

I further agree with you about seeking a therapist. It is an opportunity, for

me at least, to utilize another resource in addressing those issues and

circumstances in my life. I enjoy the sessions and the empowerment they

provide.

 

Jeff 

________________________________

To: LBDcaregivers

Sent: Monday, August 1, 2011 11:38 PM

Subject: Re: a day in my life

 

Jeff,

Well, I am a counselor/therapist, and can assure you that your point is

accurate. Where you seek a therapist CAN be important. For example, some

clergy are not equipped to deal with this issue. Some are. However, keep in

mind that typical clergy members are not trained for years in psychology and

therapeutic approaches and issues. SO, considering that, in some cases a

psychotherapist is needed, or perhaps a psychologist. And perhaps the clergy

person could recommend one that would be really appropriate...so I am not in the

least 'dissing' clergy! And if you try a therapist and they just don't get it

or have the skills in your opinion, first assess if you are evaluating them

fairly or if you are uncomfortable with some of the ways they are challenging

you, OR if they are genuinely inadequate. If they are inadequate, move on!

Don't waste your time or money. I regret the need to say it, but there are

plenty of inadequate psychotherapists out

there, some woefully so. But there are also some excellent therapists. If a

person is diligent, and honest with themself, the excellent therapists can be

located in time (or on the first try if you are fortunate!)! But it is critical

to be fair about the therapist...is the issue your own, or that they are not

equipped to handle your issues effectively. And therapy may take some

time...there are a lot of issues surrounding LBD for caregivers, and a person

will genuinely feel so much better and so much more purpose-driven if they can

address those issues in a healthy, caring environment.

I just wanted to add that, as a therapist. There is no weakness in seeking

therapy. There is actually strength.

Lori

a day in my life

i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

[Guest guest]

Dear

I am very sorry to read of the real struggle you are experiencing at the

moment. It is tough for carers and I think we can all relate to some or

all of what you have written. I do hope that the sharing of how others in

the group have handled things will help you. What Jan wrote about " making

lemonade " out of the lemons which life hands out, rang true to me. This, I

think, is what 'acceptance' means.

I found that when I acknowledged to myself that things weren't going to

change for the better, that Jim wasn't doing any of these things

deliberately and when I stepped back and had a rethink about my attitude,

then things started to change for me.

Jim started waking up every two hours during the night, needing to be taken

to the toilet. Nothing I did or said could change this. His brain was as

though it had been programmed like a robot to go through the whole process

of going to the bathroom but I had to take him there in the wheelchair and

do everything for him. My sleep was becoming very disturbed and I was

becoming cranky. At that time, I was reminded of how , writing to the

Philippian church from prison, was able to say " I have learnt to be content

whatever the situation " . That comment challenged me, as well as another

comment from - " give thanks in all situations " . If could genuinely

respond like that in his prison situation, then I started to think about how

it would work in my situation, which often felt like being trapped in a

prison.

That night, when I got back into bed after the first trip to the bathroom

with Jim, instead of humphing and grumping to myself, I started to pray

" 'Thank you that I have two more hours ahead of me to sleep before Jim needs

to go to the toilet again. Thank you that I have this opportunity to love

and to care for Jim. Thank you that you are giving me opportunities to learn

patience, compassion, .... " I found that this helped me to be relaxed and I

actually fell asleep without feeling tensed up. I was starting to learn to

" make lemonade " .

It's really tough and I don't want to sound as though it was easy. It isn't

easy. But it is possible to " make lemonade " and to enjoy the sweetness that

this lemonade can bring to your life in the tough circumstances facing both

you and your wife. For me, learning to 'give thanks' was the key to a

different attitude. I hope this will work for you too and that you can enjoy

some lemonade as well.

Warmest wishes

Elaine (61) from Sydney Australia

Carer for four years for husband Jim (82) who died peacefully in hospital on

12th February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of LBD

<http://groups.yahoo.com/group/LBDcaregivers/message/98622;_ylc=X3oDMTJyNHU0

b2s0BF9TAzk3MzU5NzE1BGdycElkAzIxNDEzMTgEZ3Jwc3BJZAMxNzA1MDYyMjE1BG1zZ0lkAzk4

NjIyBHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEzMTIxODUzNTI-> a day in my life

Posted by: " gary.s.dale@... " gary.s.dale@...

<mailto:gary.s.dale@...?Subject=%20Re%3A%20a%20day%20in%20my%20lif

e> gary.s.dale@...

<http://profiles.yahoo.com/gary.s.dalesbcglobal (DOT) net>

Sun Jul 31, 2011 8:37 pm (PDT)

i thought i would share a day as caregiver, with you. i hear a lot about

dying and the patients, inflicted, etc. maybe this will ring true in some of

your ears about caregiving- that's the support we are trying to give to each

other. i woke up this morning feeling bad again about not being able to get

up in time to get me and wife (59-LBD apparently) to church. it's too much

for ME. i have to dress her, potty her, feed her and then me also. heck with

that- i'm too tired. i wish we would both just not wake up together. keep

hoping for that end of world mayan 2012 thing, or that rapture before

tribulation my pastor talks about, or maybe a miracle mis-diagonosis thing.

we go again in oct. i am in tribulation already so how is that going to work

out? i read about the grieving process: denial, anger, bargaining,

acceptance. i thought that was suppose to go in order but i go thru them

every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had

headachs last nite,bad dreams, couldn't sleep. can't solve this problem. now

i think i am clenching my teeth/jaws together as i sleep..as if i am bracing

for a crash- no wonder i had a headache. finally got up, 11 am and did some

yardwork(i enjoy). highlite of the day was eating: wife likes waffles in

morning, small lunch and hotdogs for dinner. i do all the shopping, cooking,

laundry now (sound familiar?-especially to you men) sent my brother an

e-mail and put car back in garage from driveway (exciting stuff-didn't even

leave the house today). was going to take a walk down to my neighbors but

again said what the heck. tomorrow i will try harder (going on 1 1/2 to 2

years now) I hope my being candid about caregiving gives someone hope that

you are not alone out there- i am here with you my fellow givers.

[Guest guest]

Hi ,

Thank you for posting this for all of us caregivers that go it alone! I've been

caring for my Dad for 3 1/2 yrs., even though I have other siblings and it's

like you say. All night long being awake (in my case depression is an issue and

it may be in yours too) being housebound with your loved one is also difficult

to deal with. I replaced my work life over nine years ago ( I also took care of

my mom with Alzheimers) with the internet, gardening, fixing things in the

house, planning trips to take later in life, etc. I guess you could say I just

dream about what could be. It's sad when your spouse has an illness that

separates you. My husband just passed away on 7-17 from cancer so I understand

the grieving process as I'm still in it. I'm sure you also suffer from that

feeling of being cheated out of growing old together. It's never like we

planned, is it? Keep trying to visit your neighbors though. The simple face to

face conversations and visits can really make a day. Please remember, from me to

you and all of us caregivers, I think we are all amazing!

Dot

>

> i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

>

[Guest guest]

Dot, so sorry to hear of your husband's passing, and just so recently. you took

care of your mom, and now your dad. you are one of the saints here on earth. God

has given you so much strength.  i guess we won't understand until we get to

heaven. perhaps i will meet you there. my wife was very slow walking today (LBD)

-was glad to have caregiver for 4 hrs. it adds up money-wise as it is

out-of-pocket. i went for a donut hike with 2 neighbors- we burned off less than

we ate.  it is evening now and i am back to that weird caregiving feeling. you

know the one i mean. i take an anti-depressant but it isn't a miracle pill.  i

will let you go now. please take care of yourself. you deserve a jelly

donut.     gary

Subject: Re: a day in my life

To: LBDcaregivers

Date: Tuesday, August 2, 2011, 6:44 AM

 

Hi ,

Thank you for posting this for all of us caregivers that go it alone! I've been

caring for my Dad for 3 1/2 yrs., even though I have other siblings and it's

like you say. All night long being awake (in my case depression is an issue and

it may be in yours too) being housebound with your loved one is also difficult

to deal with. I replaced my work life over nine years ago ( I also took care of

my mom with Alzheimers) with the internet, gardening, fixing things in the

house, planning trips to take later in life, etc. I guess you could say I just

dream about what could be. It's sad when your spouse has an illness that

separates you. My husband just passed away on 7-17 from cancer so I understand

the grieving process as I'm still in it. I'm sure you also suffer from that

feeling of being cheated out of growing old together. It's never like we

planned, is it? Keep trying to visit your neighbors though. The simple face to

face conversations and visits can

really make a day. Please remember, from me to you and all of us caregivers, I

think we are all amazing!

Dot

>

> i thought i would share a day as caregiver, with you. i hear a lot about dying

and the patients, inflicted, etc. maybe this will ring true in some of your ears

about caregiving- that's the support we are trying to give to each other. i woke

up this morning feeling bad again about not being able to get up in time to get

me and wife (59-LBD apparently) to church. it's too much for ME. i have to dress

her, potty her, feed her and then me also. heck with that- i'm too tired. i wish

we would both just not wake up together. keep hoping for that end of world mayan

2012 thing, or that rapture before tribulation my pastor talks about, or maybe a

miracle mis-diagonosis thing. we go again in oct. i am in tribulation already so

how is that going to work out? i read about the grieving process: denial, anger,

bargaining, acceptance. i thought that was suppose to go in order but i go thru

them every day, except acceptance. once i accept suffering, illness,corruption,

inhumanity-i will have lost. i sleep poorly now (how about you?) i had headachs

last nite,bad dreams, couldn't sleep. can't solve this problem. now i think i am

clenching my teeth/jaws together as i sleep..as if i am bracing for a crash- no

wonder i had a headache. finally got up, 11 am and did some yardwork(i enjoy).

highlite of the day was eating: wife likes waffles in morning, small lunch and

hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

>