Re: DH's status as of late

[Guest guest]

Hi Bonnie,

The Walmart incident was tough. That had to be handled because of the clerk and

paying up and everything. In my experience, confrontation only leads to a bad

place. I've started giving kind of non-answers or comments such as 'Hmmm - I

don't know " or " Gee - I can't remember " or " do you really think so " and then

trying to change the subject. Sometimes I don't even answer an odd question or

comment - I just let it hang there in the air. That works more often than you

would think it would. My dad is in a nursing home now but I did (and still do)

go through different periods of resentment. It's hard. I never noticed any

variation in hearing but did notice variations in a lot of other things.

Toni

>

> I am seeing a general slow decline with my DH, Lee. He was not

> diagnosed until three or four years after I noticed a change in

> him. He was diagnosed in 10/2006. He is doing fairly well, though I

> am wondering about how long he can go on doing as much as he is. He

> is still working... self employed, and he is making some

> mistakes. So far, the mistakes are not dangerous, but his job is his

> life time hobby. He loves his job and it is hard to think of taking

> this away from him.

>

> I am noticing more decrease in his mental abilities and find that it

> is becoming difficult for me not to have an argument with him. We

> basically have had a fight free marriage, however, as he is

> progressing in this disease it is becoming harder and harder to not

> get into small fights. He is becoming more and more difficult to

> deal with. I am not sure how to handle this. I know I am the one who

> is without as many problems but it is difficult to not take a

> stand. The latest was at Walmart in the checkout line. I was

> checking us out at the self check out. There was an item that was

> not in the computer, and the salesclerk came over from her " desk " ,

> and stated she could not sell it to us. The first salesclerk took

> the item, putting it out of sight, who knows where. A new clerk came

> on just as I was finishing up, and that item came up again in the

> computer at the end of our transaction. I was explaining it to the

> new salesclerk, and, DH insisted the first salesclerk had given it

> back to us. I knew it was not in our bags with the other purchased

> items, and, had to state that to the salesclerk. This could have

> become very embarrassing if the new salesclerk had pursued it. It

> would have taken a lot of time to go back through and check the list

> of what we had paid for. We had several bags full of personal and

> grocery items. Later, at home, I asking him to show me where the

> bag of small Almond Joy's were. I know he can't help this... he

> doesn't follow and process well anymore and I can see where it is

> worsening as I am seeing this type of situation happening on a more

> frequent basis.

>

> I hate the confrontation that is beginning to happen, which happens

> at home also over little things that used to just be ignored. I am

> open to ideas on how I can more gently handle the situation,

> especially when it is in front of other people.

>

> DH's hearing was tested as severe hearing loss. I am questioning

> that as sometimes he seems to hear just fine, and other times, I have

> to really speak up to be heard. I am wondering if this may be due to

> LBD. His hearing seems to fluctuate between bad, and fair. Of

> course, sometimes when I really speak up, he gets mad and grumps

> because I am yelling. Go figure....

>

> Thanks for letting me vent. I am starting to build up resentment,

> and I really don't want to do that. DH needs all the empathy I can muster.

> Bonnie

>

[Guest guest]

> Sometimes I don't even answer an odd question or comment

Oh, I do use this one quite a lot. Often, it is when I can not

handle any more.

Lee is still at the point where he is functioning quite well, and,

his family is in denial of how bad he really is. This includes his 4

brothers, 4 sisters, my son, and our son. I often have to try to set

them a little closer to the truth too.

I am thinking it is actually going to be easier mentally when things

do get worse. He realizes he is going down hill, and I know it is

bothering him. He knows this is a mental deterioration disease. He

is still puttering around the house too, trying to help me, but, in

the long run, I end up having to go behind him and redo what he has

done if I can. I'm not getting much done that needs to be done as my

energy is spent checking to see what his latest screw up is. The

first symptom that something was not right with Lee that I noticed

was when he would work on the electric fences for the horses. He

could not figure out how the horses were getting out. Well... he did

not have the sections of electric fencing hooked together. He is

still trying to do jobs like this, (and, I have to allow him to or

all he would do is sleep during the day). There is so much yet to do

around here before I can handle everything.

Writing this is helping as I am realizing I need to prioritize the

tasks needing doing. I need to see that things are in order, and,

locked up if need be to keep ourselves safe as well as the

critters. (Thankfully, there are less of the critters now than there

were last fall. ) I feel like I am playing catch up, so I may need

to hire some help to get caught up on the most important unfinished projects.

I often think maybe it is time to sell and move into an

apartment. <sigh> I'm not a city gal... that would be very hard to do.

Thanks again for letting me vent... It isn't like life with DH has

changed that much, it is just that the pile of s**t just seems to get

deeper and deeper with no relief. One would think that life would

get easier, not harder.

Bonnie

[Guest guest]

I understand the family denial because I actually had it myself for quite

awhile. They can seem so normal at times. I have no family to convince. I am

an only child and my father's family is gone. However, I can see that whether

or not you have family to share, the burden of the caregiver role is such a

lonely one. You now have to make every single decision and handle everything

that comes up. It can be exhausting and so deeply isolating and lonely. I've

always been married. I have a divorced friend. I often wonder if this is how

she feels. I know she is lonely and struggles with handling everything.

My father would sleep excessively also. The only thing that kept him awake was

going out shopping. That was his only hobby - finding bargains. I would take

him out for about three hours each day and follow him around as he looked at the

clearance aisles. I really felt like I was wasting away mentally. He wouldn't

go to a movie, or out to eat. He wouldn't even go to the Air and Space Museum

close to us because you had to pay to park. He was very frugal and somewhat

unsocial. He wouldn't go to a senior center. He didn't seem able to

concentrate on TV and never was a reader. If I didn't take him shopping, he

would just sleep and I found the more he slept, the more confused he seemed to

get.... so out to shop each and every day. I was lucky in that I could quit

work to take care of him. It sounds like you don't have that luxury with your

critters, etc.

I read a good book, I actually think it was about nursing homes and assisted

living, and it mentioned taking action before a crisis occurs. I thought of it

when you mentioned hiring help and possibly selling your place. It sounds like

you should start looking into help in some form or another. I feel for you.

Toni

>

>

> > Sometimes I don't even answer an odd question or comment

>

> Oh, I do use this one quite a lot. Often, it is when I can not

> handle any more.

>

> Lee is still at the point where he is functioning quite well, and,

> his family is in denial of how bad he really is. This includes his 4

> brothers, 4 sisters, my son, and our son. I often have to try to set

> them a little closer to the truth too.

>

> I am thinking it is actually going to be easier mentally when things

> do get worse. He realizes he is going down hill, and I know it is

> bothering him. He knows this is a mental deterioration disease. He

> is still puttering around the house too, trying to help me, but, in

> the long run, I end up having to go behind him and redo what he has

> done if I can. I'm not getting much done that needs to be done as my

> energy is spent checking to see what his latest screw up is. The

> first symptom that something was not right with Lee that I noticed

> was when he would work on the electric fences for the horses. He

> could not figure out how the horses were getting out. Well... he did

> not have the sections of electric fencing hooked together. He is

> still trying to do jobs like this, (and, I have to allow him to or

> all he would do is sleep during the day). There is so much yet to do

> around here before I can handle everything.

>

> Writing this is helping as I am realizing I need to prioritize the

> tasks needing doing. I need to see that things are in order, and,

> locked up if need be to keep ourselves safe as well as the

> critters. (Thankfully, there are less of the critters now than there

> were last fall. ) I feel like I am playing catch up, so I may need

> to hire some help to get caught up on the most important unfinished projects.

>

> I often think maybe it is time to sell and move into an

> apartment. <sigh> I'm not a city gal... that would be very hard to do.

>

> Thanks again for letting me vent... It isn't like life with DH has

> changed that much, it is just that the pile of s**t just seems to get

> deeper and deeper with no relief. One would think that life would

> get easier, not harder.

> Bonnie

>

[Guest guest]

Hi Bonnie

<<I hate the confrontation that is beginning to happen, which happens

at home also over little things that used to just be ignored. I am

open to ideas on how I can more gently handle the situation,

especially when it is in front of other people.>>

One of the ways I tried to handle difficult situations was to imagine that

Jim was a guest or visitor to our home. This was because with guests, one is

more likely to hold back with criticisms or to be more ready to accept a

difficult situation without creating a 'scene'. By treating Jim as an

honoured guest, I was able to step back and not react so quickly.

Another coping mechanism was to ask myself the question " How important is

this? " and learn to let some things go. I don't know what Almond Joys are

(!) nor how much they cost but it might help to weigh up whether the cost of

an item and the loss of it is really worth a confrontation.

This group also helped me to learn to transfer the blame for many things to

'Lewy' - this helps to acknowledge that it's the fluctuations in the brain

that are the real cause of this behaviour. I also found that Jim's hearing

fluctuated - and this must have been the changes in the brain causing

this....

Elaine (61) from Sydney Australia

Caring for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

symptoms began at least 5 years before.

Jim died peacefully on 12th February 2011 in hospital after his brain

stopped telling him to eat and drink.

[Guest guest]

I lived with my Mom and missed the signs because it is so easy to find another

reason for the out of the ordinary things that happened,

I have siblings, but I was the one that was there for Mom. I had a sister that

lived about 40 minutes away but I couldn't get her to realize that all dementias

are not Alzheimer's. She was stuck on that and didn't want to look at any

documentation because it was Alzheimer's. I have a brother that lived about a

thousand miles away and when Mom passed away he said he never wanted to hear the

word Lewy Body Dementia ever again. I could not convince them that you have to

talk in short simple sentences and you need to keep the discussion limited to

now...not the past, not the future, just NOW. In some way it is worse having

the siblings when they don't believe. I was happy to be there with Mom and take

care of her with tender loving care, and the topic of dementia or LBD never came

up. She heard it at the doctor's office and she did not want to talk about it.

I treated her no different, except the gradual change in the roles of parent

taking care of her children, and children taking care of their parents.

>

I have no family to convince. I am an only child and my father's family is

gone. However, I can see that whether or not you have family to share, the

burden of the caregiver role is such a lonely one. You now have to make every

single decision and handle everything that comes up. It can be exhausting and

so deeply isolating and lonely.