ksera

Dear Friends,

Once again, it's been along time since I've sat down at the computer.

Hello & welcome to the newcomers & at the same time sorry you have had
to join us. This is a wonderful group with lots of support & wisdom.

Evelyn, I am sorry to hear that the problems with Ida are increasing.
I really can't add anything that hasn't been said by others, but you
are always in my thoughts.

John is becoming a total recluse. The only time he goes out of the
house is to let the dogs in & out. When his sister & family were here
after Xmas, Jeannie mentioned it but said he seems so content with
everything it's hard to know whether or not to push him to get out.
He even had our daughter cut his hair the last time---He thanked her
saying that he just couldn't face getting in the car.

He handled their visit rather well---they were site-seeing all day
everyday but evenings were difficult. Their son is very hyper-active
& combined with Boston Terriers, that interrupted John's routine too
much. Our daughter's ex will be bringing our grandosn down the 18th
to see us---Seth will stay with his mom but I said Joseph could stay
here. Much to my surprise, John's immediate reaction was no to Joseph
staying here---they have always gotten along well & are content to
talk or just watch tv together. I haven't mentioned it again to see
if John's reaction would be the same.

I'm curious if you think I should push him to go out---or just leave
well enough alone as he is very content ----I feel it is not
depression---he just feels safe in his world here at home.

Always,

Char

beth

Char, My opinion is to basically accept that cocooning instinct. However,
I would be concerned about decline in the physical abilities that is bound
to happen when you stay in the house. He may not have mobility problems
now, but a decrease in activity will set him up for a steady decline---first
stamina, then walking steadiness, and eventually difficulty getting to
standing--all of which increase the risk of fall. If he has the agitated
pacing type of behavior, then it's less of a concern.

So if you can be sure he gets some walking outside of the house at least
every day, then I'd be inclined not to push other outings. You know him
best, but going for that walk together might be an idea. When I had my MIL
here, we took her out for 10-15 min. as many times a day as we could.
Weather permitting-it was 2 long(a little less than a mile) walks daily-but
on days when things were going roughly, we'd add shorter walks for a break.
Her distance did decrease a bit (she was 84 at the time) and we accommodated
that. Now her "walk" is about 400'. It won't work with everyone, but I
strongly believe that encouraging that regular physical activity keeps them
on their feet longer; but with some people nothing works.

Beth

darryl

Hi Char,

I agree with Beth, don't push, but perhaps you can entice him in some
way--unfortunately, I don't have many suggestions. For my Dad, if
there was a coffee and donut at the end of the experience, he'd jump
through a ring of fire. Will John take the dogs for a walk or do some
other activity that gets him out and about several times per week?

Take care, it's good to hear from you,
Darryl.

evelyn ruut

Hi Char,

It is so good to see you posting again!

About John, I would say that although it might be tempting to just go with
his own wishes to remain inside all the time, I think that staying active
may preserve his waning abilities longer. But certainly not to the point
of his getting really upset or anything like that. It is a tough call,
and one you should use your own intuition on a time by time basis. Try to
keep him active if you can, but not to the point of losing his trust or
confidence or upsetting him too much.

This is how we managed it with Ida. Lots of coaxing and gentle insistence
that it was for her own good to go to daycare, for instance. Although at
this stage of the game she isn't getting much out of daycare at all anymore.
I am thinking of giving it up and just having our neighbor sit once in a
while if we need to go out.

--
Evelyn

(To reply to me personally, remove sox)

gwen love

Char, my opinion would be not to push him. If he feels safe and
comfortable at home then let him stay. Keeping him happy is best IMHO.
When Grayson did not want to get out, I let him stay in. If he didn't want
to talk to the kids on the phone, I didn't push it. I let him make those
decisions; there were so few he could make.
Gwen


================================================== ==================
There are two ways of spreading light- to be the candle or the mirror
that reflects it.
Edith Wharton
================================================== ==================


| Dear Friends,
|
| Once again, it's been along time since I've sat down at the computer.
|
| Hello & welcome to the newcomers & at the same time sorry you have had
| to join us. This is a wonderful group with lots of support & wisdom.
|
| Evelyn, I am sorry to hear that the problems with Ida are increasing.
| I really can't add anything that hasn't been said by others, but you
| are always in my thoughts.
|
| John is becoming a total recluse. The only time he goes out of the
| house is to let the dogs in & out. When his sister & family were here
| after Xmas, Jeannie mentioned it but said he seems so content with
| everything it's hard to know whether or not to push him to get out.
| He even had our daughter cut his hair the last time---He thanked her
| saying that he just couldn't face getting in the car.
|
| He handled their visit rather well---they were site-seeing all day
| everyday but evenings were difficult. Their son is very hyper-active
| & combined with Boston Terriers, that interrupted John's routine too
| much. Our daughter's ex will be bringing our grandosn down the 18th
| to see us---Seth will stay with his mom but I said Joseph could stay
| here. Much to my surprise, John's immediate reaction was no to Joseph
| staying here---they have always gotten along well & are content to
| talk or just watch tv together. I haven't mentioned it again to see
| if John's reaction would be the same.
|
| I'm curious if you think I should push him to go out---or just leave
| well enough alone as he is very content ----I feel it is not
| depression---he just feels safe in his world here at home.
|
| Always,
|
| Char

Char:

I am so sorry to hear that John is not wanting to get out. I realize that
everyone's situation is different but perhaps I am about the only one on
this newsgroup that knows what John is feeling. I went through a time of
total withdrawal from everyone and everything about a year and a half after
my diagnosis with Early Onset Alzheimer's. I wanted to be left alone. I'm
not sure as I sit and write this to you exactly why that happened to me. I
am not sure if I was angry with God or perhaps trying to bargain with Him to
make me better. All I do know is that I didn't want to be bother by anyone,
at times not even by my family. I guess what I am trying to tell you is
that I needed that time alone to find out what it was I needed to do to
finally accept what I had, and how I was going to live with my condition.
My family allowed me that time alone, and now that I have accepted my
condition. I accept what I have, I deal with it. I may conquer it, it may
conquer me but I accept it. I live each day to it's fullest.

Alzheimer's may change my outward appearance but it will not change my
heart, nor will it change John's. He will always be the man inside that he
is to you and to his family right this moment. He is trying to accept the
hand that he has been dealt. It takes some of us longer to accept it than
it does others, some accept it and some never do. Be patient and give John
some time alone to examine his feelings.

My best to you and to John. Please tell him that I asked about him. Char,
this is a very confusing time for him, he is frightened, angry and a number
of other emotions that he probably doesn't even understand as of yet. Love
him that is what he needs most right now.

Always,
Kathy

ksera

Thanks, Beth & others for your suggestions. I know his stamina is not
big but he does get on the floor to play with the dogs & lets them
inside & out. He is still cooking plus his two daily chores are
making the bed & taking out the trash. One really good thing about
him not wanting to leave home is that I don't have to worry about him
getting tempted to drive. I also still have him do heavy stuff like
changing the butane tank for the grill & stuff like that.

I think we'll just go on as is & not worry about trying to add a more
social life for him.

Always,

Char

robert e. lewis

My father seems to be going the same way. He hasn't been out since a visit
to the doctor's office for a vitamin shot almost exactly a month ago. He
occasionally announces plans to go somewhere - last night he asked me to
drive him to church, so he could distribute the little 'Christmas video' he
decided at the last minute to make (he is still able to put it together on
the computer, though it's less coherent than in past years, and then he
makes copy after copy on the vcr). This morning, he tells me he's feeling
feverish and chilled - He's come down with relapses of this particular cold
every time he considers going out or having people come here. (And perhaps
he really is feeling it - was bundled up and is sleeping most of the day.)
He decided not to attend his bi-monthly 'Old Geezers lunch,' the third time
in a row, partly because it's catching him by surprise (not going to church
is costing him his usual mark for judging days of the week, and he's
forgetting that more now).


Everyone advised me to just let him comfortably cocoon, but I do worry it's
costing him in terms of both physical inactivity and lessened intellectual
exercise.

--
Robert

jancan

I can understand the feeling of needing a "safe place" when the world
around you isnt making much sence. Bertie had been a real "homebody"
for several years before she died. I think if staying in makes him
feel better, its ok.
Kay

adelle d. stavis, esq.

Hi!

Glad to hear from you Char. Sorry to hear John is so reclusive. I, too worry
about the lack of stimulation and movement.

John sounds so like my my FIL. Loners, used to being the competent one and
making all the decisions. It's so hard to realize you are losing yourself.

Just my 2 cents from a different perspective - feel free to ignore:

Before it was clear my FIL had dementia, and before my husband and I had any
inkling about changes in my FIL's mental state, my MIL convinced him to
swing by this area while on their annual vacation. He was starting to have
trouble by then, but we didn't know about it.

They stayed near my MIL's brother about 45 minutes South of our home. We
drove down after work on a Thursday so we could have dinner all together as
a family (at that time, Doug and I only had one child and Rebecca was a
sweet but very chatty 3 year old). Doug had arranged to take Friday off from
work so we as to go as a family to visit Wood's Hole (on Cape Cod - even
further south) as a day trip. Towards the end of the evening, my MIL
(running interference) said my FIL wasn't up for the trip and begged off.
Then they went without us, and told us all about the lovely relaxing time
they had.

Doug was really hurt that his own parents didn't want to spend time with him
after he'd gone so far out of his way to try and be with them. It was only
in hind sight that we have come to realize that my FIL was probably over
stimulated by having to be social and also by Rebecca's antics (a very
active child) and just couldn't deal with it. He already was at a point
where he limited his conversations to things he knew a lot about, like
camera's, or just made innocuous comments interjected into other
conversations. He was also having significant trouble finding the word he
wanted to say, a real hallmark of frontal lobe dementia.

Why did I share this? So you can keep an eye on the whole dynamic. Just
because John finds the anticipation of Joseph being around as a source of
anxiety, doesn't mean it won't be good (or bad) for him. Right now John is
just worried about change, the same way Ida and others were worried about
going to group settings that were ultimately good for them.

Really look at John's skills right now. Is he truly overwhelmed by having
one different but familiar person around? Or would he be able to cope, if
given times for solitude, too? Especially if Seth doesn't visit for more
than a half hour or so. And would having Joseph there allow you to go visit
with your daughter and grandson without having to worry about John being by
himself? Is that an issue at all?

Are there ways to arrange some family visits before things get so advanced
that you won't be able to leave John with others?

My MIL really hurt her son by sacrificing time with him for her husband's
issues (which might have been handled by his going down without me and
Becca, or with our driving down in separate cars, Doug and his Dad going off
to shoot photos together while 'the girls' did stuff away from them -
minimizing the need to be social, minimizing time spent with Becca, etc.).
The truth about the dementia didn't come to light for another 5 or 6 years
(yes, she kept it to herself that long, even once he started having night
time hallucinations). That was a long time for my husband to feel slighted
by his parents.

I know your family has full knowledge of John's status, so that's not an
issue. But John's progression could slow and/or change. It could be years of
caretaking. Watch that you don't restrict your life and your ability to
spend time with your family too early in the process. The time will come.
Does it have to start now?

Adelle