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I'm so sad
Cheryle Gardiner
Posted: Tuesday, January 17, 2012 10:22 AM
Joined: 11/30/2011
Posts: 529


Sometimes I'm not certain whether to post here or on the Caregivers forum. I know we all go through the same kinds of things, but having lost my mom almost 20 years ago, I know the emotions can feel so different, and so many of the things that happen just feel so personal. I don't suppose it really matters where I post, just that I do.

Jim's urine culture came back negative, so it appears that these changes really are another one of the drops that VaD brings.

He is now wearing incontinence briefs all the time, but when I got there yesterday, he was wet anyway, so they're going to toilet him more frequently. I asked about more absorbent briefs, but they may go directly to the diaper type. I know there are more absorbent styles out there, and would appreciate brand names. If I have to, I will buy them for him. I do think the diaper would be hard for him.

He still dresses himself, but has trouble putting his Levis on - he loves wearing them, and they make him feel more himself, but he can't zip them and the button has been a problem for some time. Today I will take several pair of sweat pants (he calls them his "undress blues," a hangover term from his Navy days in the 60s) since they'll be easier for him to handle and less chafing if he does have an accident. The care home feels (as do I) that it's important for him to be as independent as possible for as long as possible.

So yesterday I brought home all of his underwear and all but one pair of Levis - the pair he was wearing. It feels so sad to me, and it's such a symbol of his decline.

He dreamed night before last that he had been camping with his kids and they had gotten lost. When he woke yesterday morning, he asked the staff if they knew where they were and was very worried about them. In his mind, they were very young - about 6 and 11 - and the staff reassured him that they were okay and that I was taking care of them.

His friend Tom stopped by to see him Saturday, on his way to Mexico, but Jim didn't remember seeing him. Yesterday, his other long-time friend, Doug, called to tell me he was going to see Jim, but when I told Jim he didn't seem to remember who Doug is. Just a vacant look, but said it was okay for him to come.

He remembers some things that have happened recently. He remembers buying my wedding and engagement rings two years ago, and he remembered that my sons were driving up to Seattle last weekend, but he didn't seem to remember their names. He still has his sense of humor and he has all of the nurses and aides charmed. When I look at him, at his dear face, he still looks the same and it's hard to really understand that so much has changed. I feel sometimes that I could just say to him, Come on, honey, the game's over. Let's get back to our lives. But I can't say that to him.

I'm glad that he seems to have accepted where he is and doesn't beg to come home. It's so much easier on both of us. But I also know that it means the disease has progressed and that's hard. To see my Jim, who has rebelled against authority all his life, be so meek and compliant with all of the routines, is hard. To see this man who was always fixing, making, changing, doing, be content with this much slower pace of his life is heartbreaking. He no longer speaks of things we "will do," or plans for the future. His world has shrunk to a very small space, one that he still forgets the shape of, the location of his room, whether he's just eaten lunch or supper, whether I've been recently or not for two days. It's just so sad and so very hard.

I miss my beloved.
Iris L.
Posted: Tuesday, January 17, 2012 12:12 PM
Joined: 12/15/2011
Posts: 16116


Cheryle Gardiner wrote:
Jim's urine culture came back negative, so it appears that these changes really are another one of the drops that VaD brings.

He still dresses himself, but has trouble putting his Levis on - he loves wearing them, and they make him feel more himself, but he can't zip them and the button has been a problem for some time.
I'm sorry to hear about the declines, Cheryle.  Is he getting his medications on time?  I forgot to take one of my blood pressure medications when I was on the Cymbalta, and I know my blood pressure got out of control.  I have also found out that my cholesterol levels are high.  Is he on a low cholesterol diet?
I wear elastic waist jeans.  They really help ease dressing.
Iris L.

skericheri
Posted: Tuesday, January 17, 2012 12:26 PM
Joined: 12/10/2011
Posts: 287


Cheryle---Your post was eloquently written.  I could feel your sadness.  Because I experienced the same emotion dealing with Charlie...I understand the depth of your sadness. 

  

You will continue to feel sad throughout Jim's A/D journey...but...If you are as lucky as I was, you may reach a new level of acceptance. Let me try and explain 

  

One afternoon as I was in my 2nd hour of feeding Charlie. I experienced a feeling of tenderness and love that I have never felt and will probably never feel again.  With it came the realization that there was absolutely nothing that I could do that would change the final outcome.  My sadness diminished.  I felt at peace.  Instead of focusing on bending Charlie to cooperate with my efforts to feed him, I was able to focus more on meeting Charlie in the moment that he was experiencing.   I relaxed...He relaxed and we held hands

 

From that day on...continued encouraging Charlie to eat...but...was able to back off when I sensed his anger over my efforts. 

 

I pray that you reach this point with Jim sooner than I did with Charlie 

 

 


Cheryle Gardiner
Posted: Tuesday, January 17, 2012 3:53 PM
Joined: 11/30/2011
Posts: 529


Thanks, Iris, for your comments. Actually, Jim's cholesterol is the one thing he's never had to worry about - it's always been perfect. They are very good about giving his meds on time, so I do think it's just the disease. I thought about getting elastic-waist jeans, but he loves his Levis so much that I think it will be easier to go to sweats than to another type of jeans. He's also gained some weight since he's been there (zoomed all the way up to 147.5! Wish I could "zoom" down that far!), and I think the sweats will work better all the way around.

Thank you, too, Cheri. I appreciate your support because I do know you understand what this feels like. I really don't push him to do anything at all; he's always resisted even my "suggestions," but now he just does what I say with no push back at all. In some ways that's the saddest of all. He used to look at me and say, "Yes, Mom," with a wry smile. Now he just does it.

Even the RN told me today that she's seen a real decline since he was placed four months ago. It's so hard to let go.
love lost
Posted: Tuesday, January 17, 2012 3:58 PM
Joined: 12/4/2011
Posts: 28


Cheryl......

Just to let you know.  I altered the button hole on the jeans and made it about 1/3 inch longer.  That made it easier for Rusty to button them.  He seemed to have trouble with the smaller buttonhole as opposed to doing the button.  You also could try to buy the jeans 1 inch larger in the waist and enlarge the button hole.  

Rusty started to wear suspenders and that helped with the larger waist that didn't seem as tight as usual to him.  That what was making it hard for him to button.  He liked his britches tighter around the waist.

We found the depends briefs to be the best but make sure they are not too big.  Rusty has no bottom and his waist was a 33. I had to buy size 34 inch waisted jeans to fit over the briefs. The men's medium was too big because he has no fanny. There was too much room for leakage. I started buying the ladies s/m and they fit closer and much better.  That may help jim if he  has no fanny.LOL

The other thing I did was put a Depends guard in the brief when Rusty had a lot to drink and that helped cause the guard could be removed and replaced when urine was the only problem - therefore keeping the brief dry and not going through all the changing.  I found when Rusty was in rehab he was not toileted as often as they said he was. Things got busy and sometimes it was not on the same schedule.

I know the loneliness you feel, Cheryl.  Today is exactly 1 month since my best friend crossed over the rainbow bridge to get his wings. We had been married 36 years.

I'm sure Jim knows the love that you impart whether or not he recognizes you or not. You are someone to love and he can be safe with.

My best to you. Hope some of this info helped.

Jan (lovelost1217)


jfkoc
Posted: Tuesday, January 17, 2012 4:25 PM
Joined: 12/4/2011
Posts: 17318


Your talk of the jeans (everyday wear here) got me thinking. We had to go from button Levi's to zip Wrangler (slimer fit).  What about velcro? I think being able to get them off quickly might mean dryer pants.

 

Would some one who could figure out if this could work jump in please.


LarryD
Posted: Tuesday, January 17, 2012 4:39 PM
Joined: 12/1/2011
Posts: 1320


Cheryle,

 


Your post reminded me of the same passage with my wife. She was always so particular about her clothes and appearance. She would never wear anything with elastic in the waist. That was for old ladies.  Now she is in polyester pants with elastic waistbands because she is no longer aware. She would be mortified.  I kept her in her old style as long as I could but it became impossible. Plus now she is in cotton tee shirts every day and I have tried to clear out her side of the closet but just can’t throw away some of her pretty sweaters and skirts and jackets. I just don’t go in that closet very often any more.


I travel up and down the same emotional ladder I guess everyone goes through.  Most days now I do okay but then a love song will play on the radio or TV and it brings tears to my eyes. I wish I would have told her I loved her more when she could understand.


She can do very little now but she still smiles and laughs at me when I act silly. Those moments are the high lights of my days.


I know you will make it….. We all will……

 


love lost
Posted: Tuesday, January 17, 2012 8:46 PM
Joined: 12/4/2011
Posts: 28


Cheryl.  I think the velcro would work but you might have to purchase some of those tab thing that extend the waistband and remove the button part to put in velcro.

It's worth a try.  Miles Kimball and HarrietCarter catalogs have had these extensions in them.


jfkoc
Posted: Wednesday, January 18, 2012 8:12 AM
Joined: 12/4/2011
Posts: 17318


you could not just unsew the buttons or Gorilla glue the velcro to them?
Cheryle Gardiner
Posted: Wednesday, January 18, 2012 9:41 AM
Joined: 11/30/2011
Posts: 529


Thank you all so much for your ideas and suggestions.

The issue with buttons/zippers is primarily because his fine motor skills are so impaired from his strokes, and he can't grasp the button and/or zipper. He wore Levi 501s for years, which button all the way up. Last summer, we switched to 505s, which have a zipper, and he was able to manage that for a while. We did go to a larger waist size, which helped for a while, but even that's problematic now.

I will look at some with an elastic waistband. I didn't realize they made them for men! He really is a skinny guy - no butt, not much of a gut, but he walks leaning forward, so I know that's part of the problem, too. I tried to get him to go to suspenders, but he refused. If I get them any bigger in the waist, I think they'll fall off. He likes to wear a belt, but he's already gone through two belts since last summer. The pressure that he puts on them from his leaning strips the holes out pretty quickly.

It's kind of funny, in a way. He's always been a jeans, t-shirt/flannel shirt kind of guy, and would be the first to tell you he's no fashion plate, but oh, how proud he always was of his 501s! When we got married, he wore a suit, but as soon as the ceremony was over and the pictures made, he went upstairs and put on his Levis and t-shirt!

I don't think he'd go for the Velcro, either. I got some nice sneakers for him with Velcro closures when he couldn't tie his shoes, but he won't wear them. He'd rather stay in his slippers. For him, it's all about being able to do it for himself and not giving in to the "old person" look. I guess there's some vanity in all of us.

Larry, I understand about the closet; I only open Jim's closet when I absolutely have to.
JAB
Posted: Wednesday, January 18, 2012 11:36 AM
Joined: 11/30/2011
Posts: 740


Cheryle ... what can I say?  ((((hugs))))

I'm using the most absorbent Tena briefs, which so far are holding up.  Some have low-cost sample packs so you can try a number of different styles to see which work best.  I found the best buy for the Tenas at HDIS (Home Delivery Incontinence Supplies), and they have an excellent reputation.

Have you looked for "adaptive clothing"?  You can get denim pants with elastic waists and/or velcro fasteners, and my husband very quickly figured out the velcro.  (He also loves the Propet shoes with the velcro closings.)


You might give Buck and Buck a try.  They have an extraordinarily liberal return policy, so if Jim doesn't like them, you can send them back.

 

This post has been edited by the ALZConnected Moderator on February 14th, 2012. 

 


cathyjm
Posted: Wednesday, January 18, 2012 1:36 PM
Joined: 12/2/2011
Posts: 160


{{{{hugs}}}}

I think camping stores (REI?) have attachments to add to zipper pulls to make them much easier to grab and pull up or down. This is because lots of camping stuff (sleeping bags, parkas, backpacks) need to be zipped in cold weather with thick gloves on, or in the dark when a regular zipper pull can be hard to keep hold of.


Just to buy a little more time, maybe.

Your beloved Jim is still in there; new and dear aspects are coming forth now. Keep breathing and loving as you do.


lurk
Posted: Wednesday, January 18, 2012 3:24 PM
Joined: 12/3/2011
Posts: 652


My heart went out to you for the sadness, but I couldn't tell you so as there was no "reply" button at the time.  I know that each new revelation brings sadness to us all, but where it comes on so suddenly as to not give you breathing room, well, how hard it must be.  I hope you get some temporary help with the incontinence/dressing difficulty/pride thing, but the bottom line is that this too shall pass.  Take a breath, grit your teeth, carry one.  I'm thinking that he will become more flexible, and that it will hurt you also.
jfkoc
Posted: Wednesday, January 18, 2012 4:19 PM
Joined: 12/4/2011
Posts: 17318


Sounds so familiar...501's to 505's for the zipper but then those were cut so big they were falling down. Thank good ness  there is not a problem with the T shirts!!!
Heidi Liane'
Posted: Wednesday, January 18, 2012 4:36 PM
Joined: 12/20/2011
Posts: 66


Cheryl

I ache for yuo somuchnad my heart wants to give you agreat big hug since yuo wereone of the first ones to welcomeme tro thebaord too with my DH too.He wears the mens depends nad a brief in them if we wilbe gone long too. if he has to go soemtimes he pullsover acts like he checkiong something unzipsnd pees right thennadthereon the side of the raod.his neuro toldme part of the ALZ.likehe doensot care what hapopens or if he is caught.  he  hasa hard time with butons snaps toosokmeone once suggested using arubber band bthat toobrealks. yesIsee myDH decling somewhateach  day toothen levels off then goes bad again.i want totreasure the good days forget the bad days. and yeshis good ssuits  sport jackets tooI sometimes  i hug them and smellhis colonge stetsonand mthen cry tomyself too sad tosee whenit is rightin fornt of yur eyes.  yes weare  decluttering toand dejunkingm too forus too.  but best ofluck getig himinto sweats stanleyhates them perferes no shirt too.  best ofluck Ihate it whenhe goes down hill too somedays better than others too. Iseit more often so domy friends too.  heidi


smdpenn
Posted: Wednesday, January 18, 2012 6:30 PM
Joined: 12/3/2011
Posts: 15


Dear Cheryle,

As someone else said already, your post was so eloquent, and sO000 very sad, and it really struck a chord with me.  I think you posted on the right board.  I lost my mother to Alzheimer's in March 2010 (after 14 years with it), and now my youngish 63-year-old husband has it, diagnosed in April 2011.  It's a very different experience, and a very different, albeit equally sad, loss and grieving process.  I had my mother for almost 61 years, and my husband going on 36.

  

My husband is getting to a similar stage in some respects, though still at home and still continent, so far, with only a few "accidents" when he forgets to go soon enough.  He still dresses himself, but struggles and curses the stupid pants, jacket, etc.  I'm glad to hear there are elastic waist jeans for men, too.  Now if only there was a solution for button shirts....  Like Larry's wife, he used to be a natty dresser, and he would be mortified at his appearance now, though I try my best to keep him looking as good as possible.  Luckily, we happened to buy a nice pair of slip on "boat" shoes last summer, and those have been a godsend as he struggles to tie the sneakers he used to love to wear.  Occasionally he still puts them on and can sometimes still tie them; other times, it's the "stupid shoes" routine.

I do find these message boards so helpful, both in seeing that others are having/have had similar experiences and feelings and for the information that gets shared, and shared again, here. Thanks to all for being so open, and in this case, to you, Cheryle.

From the other Sherrill (aka Sherri, aka smdpenn)

 


love lost
Posted: Wednesday, January 18, 2012 8:11 PM
Joined: 12/4/2011
Posts: 28


smdpenn wrote:

  Now if only there was a solution for button shirts....  

 

smdpenn.  There is a solution. but it takes some doing.  I bought the large snaps that look like the buttons on jeans or on a jacket. They come in colors,like silver, bronze, black and navy.. Then I stitched part of the buttonhole closed. Left just enough open so snap parts could fit in.  Then I marked where the buttons are and cut them off and put the other end of snap on the button side. Just didn't do the neck one.  I could send you a picture of what the snaps look like and also how the shirts look.  What size shirt does hubby wear? Hopefully it's medium. I could send some to you.

Jan Martin  ....... email me .......jan9231@gmail.com


Myriam
Posted: Wednesday, January 18, 2012 10:59 PM
Joined: 12/6/2011
Posts: 3326


smdpenn wrote:

Now if only there was a solution for button shirts....  

 

What do you think about buttoning most of the buttons from the bottom of the shirt first, then pulling the shirt over his head, like a Tshirt? Once the shirt is on, then finish the buttoning.

Lorita
Posted: Thursday, January 19, 2012 10:03 AM
Joined: 12/18/2011
Posts: 10724


Cheryl,

 

I've been sitting here reading your post and all the others and crying.  What we and our loved ones have to go through.  It's so sad for all of us.  The forum, I think, helps all of us to know that we are not alone and others are having the same problems and all of us want to help each other.   There were so many good suggestions.

 

Like your husband, mine has always worn Levis or Wranglers and cowboy boots and hats.  He's still able to negotiate the zippers on his jeans but has trouble with the belts, sometimes gets it on wrongside out or misses a loop.   He has so much \trouble with the little buttons on his shirts - wonder why they make them so little.  I have to button the shirt fronts and sleeves.   Mostly when we're in the house he wears tee shirts and lounge pants.  He keeps all of his shoes under the bench at the end of the bed.   Once years ago a woman whose mother had AD said that she kept all of her clothes laying around the room - not in the closet - because if they were out  of sight she would forget she had them.   I guess that's what he's doing with his shoes.  Oh, it's so sad to see all of this happening and know there is NOT ONE THING we can do to stop it.   My mother had AD and my sister who is now 80 and I (almost 70) worry that this may happen to us.  When we forget something we wonder  - is this the beginning?    Life is not easy no  matter how you shape it but we have to keep on keeping on, dont' we?   Enough from me for now.   Later.


terromari
Posted: Thursday, January 19, 2012 6:51 PM
Joined: 12/15/2011
Posts: 859


Hi. I just got my password reset so I can now log in. Cheryl, I, too, am so sad at seeing my LO decline. He has been in a NH for 18 months, and before that was in a VA hospital for 4 months. His sisters placed him, and I was against it at the time. I am the one who keeps saying "If I could only win lotto". But the way things are, he is in a good nursing facility, a distance from me, but I need to go frequently to be with him and watch over him. He has been giving them problems with care, so the docs are tweaking his meds. Today he was sound asleep when I got there and did not awaken till maybe 1:30, when I fed him lunch. Then when the aides came to dress him they noticed a streak of blood on the sheet. His foot was bleeding between two of  his toes. The skin on his feet is very dry, so once this wound heals I'll find out how and what cream to put on his feet. I cry each time I leave there, and I keep asking myself how this happened, and how I could bring him home. But I can't give him the care he needs, and even if I could, if something happened to me he could not live alone. Makes me so sad because he was always hard working, stubbornly wanting to do things for himelf. He is not incontinent, but sometimes can't get toileted in time. The nursing facility is excellent, but they are by no means overstaffed. Today he was crying "I wish I could go home". How I wish that could happen, that there could be some miracle cure that would restore my love to better functioning. Till then, I'll just keep on trucking up there, and will continue to pray for him and the rest of us. Who knew love would be this hard?
smdpenn
Posted: Thursday, January 19, 2012 7:29 PM
Joined: 12/3/2011
Posts: 15


Love Lost (sad name) and Myriam: Thanks for the suggestions for button shirts.  It is also getting harder for him to find the holes in sleeves and put his hands through them, so, sadly, I think I need to stick with t-shirts because they give more when he struggles or needs my help. Very clever idea with the snaps, though!
flutediva
Posted: Thursday, February 9, 2012 1:32 PM
Joined: 2/7/2012
Posts: 4


I'm new to this website and to posting, but I'm not new to the topics discussed.  I am crying right now realizing that my horror of seeing mom in that same style shirt and elastic waist pants is not my unique reality.  Now I see that her argumentative state of saying that these are the only clothes that fit and that cotton breaths, and nothing else fits her, etc, etc, are just her way of trying to say that she cannot manipulate buttons, etc.  Wow- I am scared for both her future and mine as we all see the progression of this horrid disease.
DZ
Posted: Friday, February 10, 2012 10:50 AM
Joined: 12/7/2011
Posts: 1736


love lost wrote:

Cheryl.  I think the velcro would work but you might have to purchase some of those tab thing that extend the waistband and remove the button part to put in velcro.

It's worth a try.  Miles Kimball and HarrietCarter catalogs have had these extensions in them.

 
 
Iron on velcro is available. and adhesive backed too
  
I would look at Buck & Buck  they have men's jeans he may approve of
 
In have bought washable briefs for my ADW, They are gold plated, I add posy pads
 
Eversures incontinence briefs. Offering both classic incontinence Brief and incontinence Boxer Brief
 
 
DZ_DLMifm

KML
Posted: Friday, February 10, 2012 12:08 PM
Joined: 11/30/2011
Posts: 2105


Cheryl:

 

I don't usually post here.  I'm my dad's caregiver.  But I did want to tell you about Buck & Buck, they have elastic waistband jeans, with a mock fly and nice deep pockets.  They are soft and comfortable and they will hem them if needed and put a name tag on the inside if you want.  And they hold up well and last through the multiple washings.

 

My dad has always been a jeans guy and he is a skinny guy.  My dad was having a lot of trouble getting his jeans off, undoing the belt, unbuttoning the jeans, pulling the zipper down, it was just too many steps and it resulted in a lot of accidents and he would always have a wet spot in front of his pants.  He also has problems with motor skills and he has a great deal of arthritis in his hands making undoing jeans more difficult.  He doesn't have any problem with his elastic waistband jeans.

 

I found these jeans at Buck & Buck and they are great. http://www.buckandbuck.com/mens_clothing/shirts_and_pants/pants/denim_putter_pants.html

 

A caregiver at my dad's facility asked me to get my dad some sweat pants because they are easier to get down and off.  I told her no, he has his elastic waistband jeans and those work just as well.  My dad has had enough taken away from him, I'm not taking his jeans away, especially since they do work just as easy as sweatpants.

 

I just wanted to mention this to you, you may want to look into getting them for your husband.