Memory being taken over by delusions and paranoia

[Guest guest]

,

I had a nice long email to you about your husband and it got " lost. " It sounds

like he may want to see a Counselor. He has some issues that won't be handled

by caring for his parent.

Some men have a lot more trouble with this caregiver thingy, than women do. I

know we have some guys here who have really done a super job. But that really

isn't the norm.

Does he have other siblings who he can talk to? All things need to be

considered and his Dad may do better in a nh than at home with you.

I am not sure what you LOs anger is about unless he is scared this could happen

to him. Sometimes looking at what our own future could be to hard.

Don't know any other good ideas but it might not make it any easier to help you

do your caregiving.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Memory being taken over by delusions and paranoia

My FIL was found unconscious about 1-2 months ago on one of his

demands to go to HIS house. His girlfriend fed him cake and candy

because he has a sweet tooth...well, he also has diabetes. We know he

fell sometime between 9PM and 11AM, no one can piece the details

completely. While in the hospital for 3 days, he had no idea who

anyone was, and apparently became quite verbally abusive to those at

the hospital. Since his release he has moved in with us. Before, I

thought much of his actions were made up for attention. Seeing him on

a daily basis I'm seeing it is not make believe. He's chatting with

his invisible friends now, asking if he should wake them for dinner.

We tell him they must be tired so maybe it's best to let them rest.

He seems to be struggling with memory issues which is made worst when

he thinks his son is a complete stranger out to take advantage of him.

Sometimes it's easier for me to deal with his situation because I

don't have the emotional ties like my husband does.

It's getting very difficult emotionally when he questions why we are

being so nice to him. He goes between we are out to steal his money,

glasses, phone, whatever is around him at that moment to depression.

He's sure that he heard the doctors say he has little time left.

Trying to figure out resources/information to give my husband to help

him cope with his father's illness. Between his hypersensitivity and

the lack of sensitivity brought about by LBD, most days have become a

very careful walk upon egg shells. When not angry over his fathers

lack of appreciation, he's riddled with guilt.

I've read all the pamphlets on caregiving. I know it's a brutal job,

but am having a difficult time giving suggestions. I've ended up as a

caregiver for my ex husband who passed on a few years ago. My skin

has toughened, but all the " don't take it personally, it's his disease

speaking " just seem to add to the frustration rather than help.

It's difficult to watch my FIL wither away from this disease, and get

concerned that the stress is going to take my husband to his grave

unless we can figure out how to help him cope.

[Guest guest]

,

" It's the disease! " is pretty lame when you are in the throes of dancing to

the Lewy Tune!

In the heat of battle you just want to take the damned disease and shove it

under a fast-moving train.

Our level of frustration is usually fairly porportional to the amount of tired

we are.

I try to keep my husband and his mother separated just because they are like

water and oil. He has guilt, but she just has always been so oppositional with

him, that he doesn't know how to let things slide. When i am not at school

teaching, I am next door to our house with Jim's mom. We usually talk once a

day on the phone, and might see each other a few minutes before i leave for

work.

Caring for the LO is one level of CGing

Maintaining a marriage is another level

Grandparenting is a level I can't ever seem to get back to.

And then there is running the household with meals, bills, laundry, at the

bare minimum.

It is not just the person! The ride emcompasses all the levels.

Were it just the personal caregiving, anybody can see their way through that!

It's the emotional layers that make walking on eggshells seem like a walk in

the park. There are land mines that are hidden in the slightest phrases,

smallest actions, and the things you used to be able to do, and are still

expected. too, but now are virtually impossible.

We understand where you are, and it sucks, and it doesn't get too much better

with practice. That's why we're here, just to be here to listen, and recommend

chocolate, a little humor, and suggest a nap, if you can fit one in.

I usually try to put a silly slant on most situations, just to break the

tension we know you are living in.

The Lewy Body butts into so many areas of our lives that those not in the

middle of it, just can't know, or see!

Most of your regular friends don't know Alz from LBD, and unless other family

members become very proactive and read every site on the web, and all the

journals, they don't get it, either.

Your spouse is the one you should be able to go to for support here, but they

are in another slower car on the same ride, and they can't be realistic enough

to see we just need a few good hugs, dinner out, and time and space to breathe

for a while.

If they admit it is bigger than they are, then they also have to admit, that

we are doing way much more than is humanly possible. So, you never understood

that Lewyville is situated on the banks of de Nile, did you?

If misery loves company, you will love the company here.

If the " concerned other' really wanted to help, they would buy and read two

books on the subject (you'll never have enough time), but they are; The 36

Hour Day and Validation Breakthrough.

Venter's Anonymous meetings can be conveened at will, and you can open with

new business, without even asking for the floor.

We pass every item you bring up unaminously, and second motions that you

haven't yet vocalized.

So, we're ears and shoulders, and we understand.

Not only does shit sometimes happen, sometimes poop rules!

You sound like you've already been initiated!

OXOXOX,

Carol

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[Guest guest]

Carol's message to about the Caregiver's lot in life was perfect,

right on the mark. Lewy caregiving has certainly changed my life and that of

my children considerably. It is changing my attitude and disposition as

well as the way I feel about my husband (the patient) Sensibly I know it is

not him, it is the disease, I still find myself getting angry with him for

having it, I guess. It is hard to believe he can lose ground so fast.

I am luckier than most with several breaks a week and relief but still

cannot cope very well at 2:30 in the morning and he urinates on the floor.

I should just be glad it wasn't the rug, I guess. Tonight at bedtime he is

worried about something that happened 40 years ago by a man who has been

dead for 10 years. Life is just fun, isn't it?

Hang in there, life will go on and we will survive Lewy.

Leona