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'bewilderment'
littleme
Posted: Thursday, April 10, 2014 11:00 PM
Joined: 5/4/2013
Posts: 1226


Just been reading on another thread, a comment from Bjjca, who mentioned the bewilderment in coping with the early stages. I have to say, this is the very best description of what I am dealing with the moment.

So many of DH's skills are just gone -coping with finances, organising appointments, shopping for food or clothes [or lotto tickets, just this morning!], choosing clothes suitable for the weather, etc etc etc. ie he just cannot live alone. I'm still deciding whether I can leave him for a couple of hours while I attend a Carers group just over the road. He probably wouldn't come to any harm, but would he fret because he wasn't at home?

But in other ways he still manages to startle me with his memory - he remembers that we are attending a friend's b'day gathering in a couple of weeks, and that the friend loves chocolates; he remembers that our daughter eats gluten-free, and wants to buy the right buns [but she will be away for Easter, and he can't remember that!

So just wanted to say, BEWILDERED is a pretty good description of how I feel most of the time. Does that ever change?


arbednelra
Posted: Thursday, April 10, 2014 11:55 PM
Joined: 2/20/2014
Posts: 452


I don't know-as I'm in the same place. 

It is a great description.  I think 'remembering' I can't have any type of 'complex' conversation anymore is the hardest for me. 

We used to have such wonderful ones! Now, he has difficulty 'keeping up' and following more simplistic ones.  Yet, he will astound me with his memory of certain things, while completely forgetting others within the same conversation thread...  It is then, I feel so alone.  I think, 'Wow- I'm losing him and nothing I can do.'  Feels so sad.

He told his good friend yesterday- who lives out of town- about it - which really impressed me.  But, then he wanted me to explain how he got 'down there' to the Memory Center downtown and how they decided he 'had this'- as he says he does not remember it at all.  I sort of tiptoed around an explanation- which then he brushed off to say- 'You worry too much' and then he went in a another direction as if he never asked that 'big question' at all.  

I wish I 'could' talk to him about it- because he would know exactly what to do! I wish I had it- because I know he would be so competent to care for me - but the shoe is on the other foot.  Now I have to figure it out on my own as I wade through the conflicting information....etc.  

I don't want him to 'get worse'- I want it to all 'go away'.  Yet- I don't want him to suffer and selfishly- I don't want to suffer much more either.  

I know it sounds terrible, but I sometimes just pray he goes peacefully in his sleep before he has to endure all of the stages and many things I read about others enduring with their LO.  Just a very peaceful ending.  If anyone deserves that- he does.  I don't want him to go and I don't want to lose him and the pain of thinking it is almost unbearable- but.....I can only wish him Love and Peace forever. 


Crushed
Posted: Friday, April 11, 2014 2:29 AM
Joined: 2/2/2014
Posts: 4675


DW was achingly lovely today.  She smiles , she laughs, she tosses her head.

She is fun to be with.    It is only when she starts to talk that you know her brain is simply not functioning correctly. Her behaviors are rational, she simply does not remember what she just did.  

 

I have more trips planned.  She has them all written down but cannot keep them straight.  She takes lovely pictures, but cannot change the battery int he camera.  She is proud she can still load the dishwasher.  I look at her sleeping and I remember our wedding 39 years ago.  I remember the joy and happiness she has brought to me.    

 

We have a semblance of a real life.  I wonder how long I can keep it going.  

 

She will be 62 in May


Kairn
Posted: Friday, April 11, 2014 3:32 AM
Joined: 10/2/2012
Posts: 484


Arbedneira, your last paragraph is my heart.


Little me, we have the same thing going on. He remembers some things that I would never expect, yet, tonight, I said I would like to go to the Memphis Film Festival, and since we would only be 20 miles away, I would like to go to Graceland.


He said, "What's at Graceland."


I said, "Elvis Presley's body.... Maybe."


He looked blank, so I said, "it's where Elvis lived." 


He had no clue who Elvis was.


Shellybell
Posted: Friday, April 11, 2014 3:48 AM
Joined: 9/20/2013
Posts: 1174


arbe - I dont think it selfish having thoughts that our LO go peacefully in their sleep. In fact it's probably the most unselfish way of thinking. From what I have learned from OP the end stages are so horrible that hospice care is probably the most loving way to ease the suffering of our LO.

 

Have noticed that my H is zooming thru stage 6 at this point and it frightens me. His behavior outside the home is becoming more than our aide can handle. He becomes irritable and agitated in a crowd, sometimes verbally lashing out. I think he gets frightened or he is sundowning now during the early afternoon around 2PM. Had to let her know after their Thurs. outing, unless I am with them, don't go out. Restaurants are out of the question, b/c he forgets how to sit down and throws up his hands with "what do you want me to do".

 

Once he sees me, all is well.  I can gently calm him down and he becomes more compliant.  (Our aide is wonderful and skillful; she talks alot so maybe that gets to him - whatever).

 

My time out is usually spent shopping, lunch with my sister, beauty salon, small art galleries locally, the normal household errands, anything to keep moving.  

 

This entire 7 yr journey has left me bewildered but we learn to cope the best we can. Thats not to say I dont have meltdowns and they are usually once a month for about 24 hrs.


Shellybell
Posted: Friday, April 11, 2014 4:41 AM
Joined: 9/20/2013
Posts: 1174


I forgot to add aide had H on b'walk on Thurs.  They were having a hot dog and a seagull swooped down on both of them and took the food right out of their hands. Maybe this freaked H out.
w/e
Posted: Friday, April 11, 2014 2:24 PM
Joined: 3/7/2012
Posts: 1710


Crushed... Your name is to the point... we all feel crushed... Dementia/AD sucks big time. You wrote, "We have a semblance of a real life..."  What is "a real life?" How do we define it, measure it, explain it, justify it? When do we terminate it? Do we have a right to terminate it? Do we have a right to die peacefully and with dignity? They shoot horses, don't they? Each of us has a very personal answer. Not one size fits all. I'm not a lawyer... not a theologian.

My husband during his dark moments of panic, fear, anxiety, stress, shame, frustration, would say to me crying and pointing to his head: "It is this. I don't like. I wish I could die. Kill me."  He was suffering terribly and he was not dead. Not yet. He died this past January peacefully of a sudden heart attack at home in my arms. He was 69. For the last 10 years of his life we had a different kind of life. It was "our" life. Our new reality. This life was often sad, painful, stressful. AH! The pain, the "unfairness" of dementia. I had to learn to adapt, and to reluctantly "accept" his existential reality in the here and now. It was mine too. I could not do "euthanasia" at stage 6... even when he was begging me! I had to do the very best I could to calm him. I learned to hold his hands to enter his world, his new reality. When I would enter his world... he would have moments of peace, calmness, comfort, and "joy" Beautiful tranquil life! I had to work hard at it and  try to learn to be super patient. Often I would cry myself to sleep. Above all, I had to remember to continue to REMEMBER FOR HIM. Work in the present, remember the past, and prepare for the future... sudden death was at our door step! I am still grieving deeply. I miss him terribly.. He is no longer suffering. Peace at last. He is free. 


Bjjca
Posted: Friday, April 11, 2014 4:50 PM
Joined: 4/29/2013
Posts: 1259


W/e, your post is heart breaking, yet it describes the situation beautifully.  I am so grateful that my husband doesn't seem to know how bad he is because it would break his heart.  This was the thing he was afraid of -- not a physical disease, but the loss of his brain.  When he was younger, he tried to get me to promise I would shoot him if he got AD.  His grandfather had it when Bob was very young and it scared him badly.  Of course, I made no such promise.  Although I sometimes think if I was diagnosed with AD I would end it.  I'm pretty much of a coward, so I'd probably never go through with it.  

For those in the early stages, for me, coping with my husband's AD got easier as it moved onward.  I was so lost, scared, and depressed in the beginning, I could barely function.  My husband was an extraordinary man who took exceptional care of his family--he was the quiet rock to my "all over the place" personality.  I did learn how to do financials, to do maintenance on the house (luckily my son does a lot), to do all of his chores, to take care of the cars, and all the other things he did.  I'm not a great caregiver and some days, I'm don't even think I'm adequate.  But in spite of it all, I love my husband and try to honor what he was.  


aussieZ
Posted: Friday, April 11, 2014 5:52 PM
Joined: 10/9/2012
Posts: 1361


These postings have pinpointed the 'heart' of this disease. As well as sad it is bewildering.  And like arbednelra one of the hardest is missing those jokes between us and the conversations that were the heart and soul of our relationship.   We have lived together for 51 years!!!!

 

The new reality sucks!!!  But the most difficult for me is loving this man that I now live with.   AD Alan has nothing in common with the old Alan.  There is no connection and joyful friendship and I sometimes very selfishly look at 'us' and wonder what exactly I now get from this partnership/relationship.  

 

It feels like I have regressed to looking after a child.  How can you have the same feelings for this person.    So like some others, I wish for both of our sakes that it could end.   the thought of him wasting away in a NH is terrible and hard to even contemplate but I know it will probably become a reality one day.   He was such a proud mad.   And on bad days I sometimes wish it would happen....to release me.   

 

So I admire and applaud those of you who can still 'love and cherish' these afflicted folk as you did in the past .   I still 'cherish' Alan and do the best I can to make his life bearable but if I was a praying lady I would pray for it to end.


sandy59
Posted: Friday, April 11, 2014 11:47 PM
Joined: 10/27/2012
Posts: 589


For me bewildered is how I feel a lot of the time.  My husband is stage 5/6.  There has been days this week that I wonder if maybe if they found the right medicine would he not be ok?  
He has had days this week that he got up and fixed his coffee just like he used to 2 years ago.  He has asked about driving again.  I say no.  Because that is what the doctor said.  

But then I read where it is ok for them to drive.  So I have been thinking.  His license has expired.  I thought he might could go down to the DMV and see if he could pass the test.  As long as I was in the vehicle when he was driving he would be ok.

I just feel bewildered.  I do not know what to do.  

Then he will have a day where he will ask who I am, whose house we live in, what is wrong with him.  

I thought spring coming would be so great.  Sunny days.  But what I forgot is how much my husband used to love to drive on those days.  And what he forgets is that he has a disease.  

I am bewildered by all of this and more.


littleme
Posted: Saturday, April 12, 2014 12:08 AM
Joined: 5/4/2013
Posts: 1226


Sandy, I am still bewildered as well. DH still makes me a cup of tea twice a day, and can refill the sugar bowl, so long as the canister is in the same place where it has always been. And when we are shopping he wants to buy Easter chocolate and buns. But last night he asked me 'What is Easter? Is it religious?' This from someone who grew up in the church, and attended regularly for 50+ years.

So much of the time, he operates well, but then something happens that brings me back to reality with a big THUD.

Hugs to all my bewildered friends.  Barbara


arbednelra
Posted: Saturday, April 12, 2014 6:01 AM
Joined: 2/20/2014
Posts: 452


Sandy

Be careful about the driving thing! First if he is at the stage you just can't. 

But, there are several options if you really think he can drive, you can have him tested for that.  Our nurse practioner and AD Dr- set up the testing (it was private-so cost us a bit, but they have it public- through the DMV) which means they give them a different type of test than you or I would have to 'pass'.  It has a cognitive functioning portion that lasts 2 hours and a driving portion where they use a car that has brakes and steering wheel for the passenger.  

They have two ways they will give him a DL here in MO - one is with restrictions and that means he can drive within a certain area around our home where he is familiar.  The second it where he can drive 'unrestricted' or anywhere. 

Either way- you want to get this BECAUSE - if he has a AD diagnosis and he has an accident where he brings harm to another- they may be able to go beyond the insurance money and take your home and everything you have. 

The reason is 'you knew' of the diagnosis and allowed him to drive anyway. Even in cases where the DH takes the keys and does something behind your back, they can - still take anything you have together or separate - as you 'should have' taken proper precautions to remove the keys or disable the vehicle so he could not drive it.  

My husband is having the test conducted again- and he is insisting it be for the one to drive 'anywhere' -which I know he will probably fail this time.  Mine probably is 'fine' for driving within a circumference of about 10 miles tops (no highways) to places he and I frequent...but no more.  The reason is, is seems to forget he is 'driving'!  He changes lanes on the HWY without a blinker or even looking.  I'm pretty sure he knows all the meaning of the signs, but he asked me the other day what the 'yield' sign meant again.  

I know if they give him a restricted license he will be very sad.  I tried to talk him into it- but well- first he agreed- then he said no- he is adamant he is fine and can drive anywhere.  

Then, the next afternoon- he asked me how he got to the 'memory center' , when did they diagnose him, how did he get down there, what did he 'do' to make the Dr. think he has it.  Am I sure it is not me who has the problem?  

So- off we go.

But- none of us WANTS this damm thing- but I would sure hate to see you lose what you have by way of happenstance or accident because you let him drive.  It only takes an instant. One wrong turn-  an elder lady with AD got on the highway going the wrong way and  young fellow of about 15 came over a hill as she was going up the hill and neither of them braked- hit head on full tilt.  Both killed instantly.  I just heard that the family of the 15 year old is going after the children of the mother and her estate!  Because they knew and "let" her continue to drive. 

So- do think long term and take care. 


Bjblyghtnin
Posted: Saturday, April 12, 2014 10:43 PM
Joined: 7/9/2013
Posts: 3205


I was told the insurance won't pay if they have been dx'd.  My H says he is in prison because he can't drive.  But he and everyone else is safer.  He was a very good driver, BUT, he didn't always stop for red lights and stop signs.

Bonnie


Sandymac
Posted: Sunday, April 13, 2014 12:25 AM
Joined: 10/31/2013
Posts: 1745


Sandy....back to the driving issue.  

Don't take any notice of the restricted licence where they can only drive in familiar surroundings.   I went that way with my husband, not that he had a restricted licence, but most of the time he would get me to drive.  When he was only going to the local shops, garage, etc he would take himself.   Then one day he left to go to the local bowling club, 5 minutes away, but took a wrong turn and he was found 26 hours later at the other side of the city.  

 

They Don't Drive if there is any doubt!!!


Reid
Posted: Sunday, April 13, 2014 12:47 AM
Joined: 4/12/2014
Posts: 2


Thank you for voicing the same concerns I am experiencing.  It makes me feel normal in this devastating journey we caregivers are forced to endure.  My husband knows what he has, he was a difficult person to begin with, but now he has an excuse.  My problem is the myriad of emotions throughout the day, every day, resentment, anger, sadness, in-adequancy at showing patience and of being understanding!
Reid
Posted: Sunday, April 13, 2014 1:16 AM
Joined: 4/12/2014
Posts: 2


My husband had been told by the Neuro  Psycologist that he did not have the cognitive skills to operate a car.  He continued to drive, nearly side wiping another a couple of times.  In desperation, I asked the police chief what I could do.  He said, let me take care of this, and he did.  We received a letter from the state MVD requesting a form to be filled out and sent to them.  Husband sent forms to both Doctor and Memory Assessment & Research Services.  State responded by suspension of license back in 2012, due to safety concerns.  His car was sold in 2013 after remaining dormant for a year.   He continues to voice that he is going to buy a car so he can have his independence.  How long will the go on - the car thing?
aussieZ
Posted: Sunday, April 13, 2014 4:35 PM
Joined: 10/9/2012
Posts: 1361


It seems to me that they don't know what time it is/what day or the difference between the fridge and the microwave.... but they remember that dammmmm car!!     Alan at least twice a week will get mad at the doctor who 'took away' his license and it is over 12 months ago.  

 

Doctor said that they often can remember the things they were emotionally tied to.   But I also think that it was part of his personality and he feels imprisoned without his wheels.


Bjblyghtnin
Posted: Sunday, April 13, 2014 11:44 PM
Joined: 7/9/2013
Posts: 3205


Yes, I hear the I am in prison because that d.. n Dr. Was afraid dh would die if he drove.  An sometimes he will say I told the dr. Not to let him drive.  Lot of anger goes with it.

Bonnie