118 replies to this topic

[FiveNotions]

Jones, ah...Alzheimer's ....yep, I get it.... when a friend or a spouse or a close family member (my mom) loses who they are,me also lose a part of ourselves...the part that is/was based on who they were as a complete person....and yes, sometimes, too often, other friends and even close family members cut us...and the Alzheimer's person...off....it now understand that is is because they themselves are in so much pain about this....and that the only way they have of dealing with it is to try to end the pain by ending the relationship. That is bad for us, but even worse for them. I will pray for you and you husband and son.

Have you made a connection with a local Alzheimer's support group, online or meetings? It's a huge help....also, is your husband still at home, if so, is home help available through Medicare, insurance, etc?

AM, welcome back! Your massive capacity for empathy is what makes you who you are...unique...and with that comes both gifts and great suffering. So glad you're here with us!

[AnotherMind]

Thanks FN - wobbling like a tight-rope walker whose lost a pole, but when I can, remembering to pay attention and reach out.

[thismoment]

AM

When the brain is in a state of self-repair and re-born emotions and retrieved mind-states appear, they can feel foreign. It's easy to confuse melancholy with depression. Melancholy is that sweetness in the tears on your cheek, not the aridity of that dark corner; it's a sign that you're rising. And you can ride down with melancholy and cry your heart out there and you'll be okay; there's peace and direction in the big hurt.

Some things appear strange and feel foreign at first, but look closely, they just may be your emotions coming home.

[AnotherMind]

Think I'm getting peoples initials mixed up with my wobbly replies - forgive my hazy brain - you know what I mean!

[Jones]

Oh. F.n. Your mom. I am so sorry. It is so horrible a disease and we are just beginning our descent. I appreciate your explanation of our "deserters".
Also appreciate the explanation of depression and melancholy, this moment.

I have been caring for him for several years now, but last year he fell and broke bones in both feet and we ended up in several rehabs for a few months. With that and other back problems he is basically paralyzed from the waist down. Eventually I was unable to lift him anymore so have hired outside help. No outside funds available, my daughter is helping me with the money. This is the same daughter I screamed at and cussed out during withdrawal. She deserted me while I was living in those rehabs with him. Swallowed big pride taking her money and beat myself up for months. It is only because of her generosity we are not in assisted living . This is where wagtail's story deeply resonated with me. My daughter/best friend was NOT there for me. The hurt was unimaginable in the shape I was in. Wagtail again.
Those months were absolute hell. The facility and most of the nurses were rude and not available. My husband came out of the surgery combative and insistent on getting out of bed on ankles he was not supposed to put weight on. I was hours from home and would not leave him. (Another lengthy story)
Somehow during this time in hell I found your website and went back on cymbalta and started bead counting. I believe you saved my life then. I had previously spent hours in the parking lot with little tiny four packs of wine crying. I know not a good idea.
We live in a small town but I did find an alzheimers support meeting on the 19th at the local library. I was not wanting to have our business out there at first (very small town) but think I will try this one.

Long answer to short questions.
Tried not to tell all of this but I guess it is time to let it out somewhat. I can cleanse/cry for a while and get on with this day.

[Jones]

Darn, entered that too soon.
Your posts! AM draw me back here. Always happy to see you writing.

[FiveNotions]

Oh, jones....I know also the pain of long distance...I was here in DC, trying to practice law as a young associate with a firm...my mother lived in my old home town...I would fly up at least once a month...drive the hour from the airport and spend just two days with her....exhausting, emotionally excruciating and horrific for me to pay for.....as she declined, before she was unable to care for herself and thanks to the help of a wonderful neighbor, I knew I had to find a nursing home for her....I did it all long distance, by telephone....at least a hundred calls, and any number of applications....none of the decent ones in the general area had space and the wait was too long....then I somehow found a lovely little place at the foothills of the Adirondacks....in the town where one of her brothers and sisters lived...and just an hour from another brother....and they could take her! But she refused to go....shortly after, she fell and ended up in the hospital....she was moved from there to the nursing home....then, I spent the next two years flying up,renting a car and driving two hours north to visit her....once a month....

It all had a happy ending....she was beautifully cared for, her siblings could get to see her regularly and so much weight was off of me....she died two years later....and I knew I had done the absolute best for her that I could....

I pray that you, too, will feel the joy and peace that comes with a happy ending.

I also must ask, is it not time perhaps for you to at least consider residential care for your husband, now that he is no longer cognizant? The last thing he would want is for his illness to cause yours.

Xox

[fishinghat]

Jones and FN

 

God bless and strengthen you. Getting older isn't for the weak of heart that is for sure. My prayers go out to you.

[Jones]

Thank you five and fishing

Joe is still aware of his surroundings. If I told him we had to go he would go willingly - I think- but I would have to go with him. I have checked out a few assisted living places and I think right now I would wear you all out with bad thinking if that happened.
I will keep him just as long as possible in our home.
In the late 90's my mom had a stroke that left her wheelchair bound. Before she even went to rehab my husband started building ramps to our house. There was no discussing about homes. Those two became the best of friends. He cooked for her, watched old westerns together, and lifted her when I wore out. I do have two older brothers mind you. We had mom for seven years.
The yeAr after she died, I got breast cancer. Once again he cared for me, cooking, cleaning, driving, praying.
So, I will keep him until we go down in flames I guess. When the time comes I will get him where he needs to go.

I wish, five, that my brothers had been as compassionate and helpful as you were to your mom. I am aware of the mental toll all that takes and I was not having to travel, drive, and not know what was going on so far away. I too pray for a good ending. I haveno t heard too many good alzheimer endings, so thank you for telling me yours to hear yours.

Lots of decisions coming up. I need to be clear thinking. Cymbalta has thrown me way off. I used to be more calm and sure of my self.

I always wondered if I did enough for my mom. So I guess that is why I got another round of care taking.
Unsure.
Unhappy

[FiveNotions]

Wow, what a wonderful and compassionate spouse he has been...definitely a keeper, and I understand now why you've made your current decision. I apologize for thinking he had lost his cognition, I misread your earlier post.

I still urge you to at least give a try to the support group. You'll be astounded to learn that you aren't the only one!

Come here and talk,vent, cry...anything...anytime! We're here for you!

[Jones]

Again. Many thanks.
No apology needed.
Sorry if I misled you as to what stage he is in but
My joe is gone forever. not the same person now.
You probably know what I mean
I will give the meeting a try.

[AnotherMind]

FN, Jones - reading your posts with a sense of awe at the resilience and strength resonating here.

 

My father's family are in turmoil at this very moment as my Aunty has been diagnosed with early onset dementia -  we are all trying to work out how to take shifts to stay with her (whilst not declaring that we are actually 'caring' for her) - she is still deeply in denial and becomes highly aggressive if she senses that we are picking up the pieces. We are working with a neurologist who is trying to gently bring her into awareness of the ramifications of her condition.She drove against orders earlier this year and had a head-on collision - thanks be that no one was killed. Its a terrible predicament to watch someone you love becoming so vulnerable, impaired and altered -  my Aunt is literally unspooling before our very eyes. After a life of travel, single-parent hood and amazing resilience and independence it seems such an unjust end - as it is for everyone who is on this journey. I wonder how we will fare as a family as the condition worstens. Already close friends are receeding and tensions forming.

 

Jones Im so sorry that withdrawals have caused some alienations - I have no idea how youv'e managed to go through this process and be a carer. You are astonishing.

 

I have huge admiration for your capacity to endure and to keep loving.

[Jones]

AM,
The beginning seemed to be the worst. How do we tell them how sick they are. How can we keep them safe. How can we take the license away. Fortunately, husband can't move or drive or I'm sure he would be halfway to Abilene by now. It was very hard to let him let me drive while he was still able until one day his driving actually made me throw up. There may come a time when he forgets he can't walk and will try t o get up and go. A doctor told me the calling for them to go "somewhere" is so strong they HAVE to do it.

I feel so for you and your family. It is an
UNJUST and evil end. So much money given to find a cure for this and also breast cancer and yet our loved ones are falling at a fast pace.

And so, at fn's suggestion I am going to try a meeting. Maybe you could find one also ?

I feel neither resilient nor strong. More like quivering jello.
We have two trailers. One good and one better. I sold the wrong one the other day and just melted with a dramatic "I can't do this"
But I am trying to hold on to one second and one breath at a time

I apologize for turning this into an Alzheimer's group.

[AnotherMind]

Dont apologise Jones - the unifying theme here is our humanity and all the complexity and struggles that this entails.

 

Sobering for me to be reminded just how hard people are doing it - puts my self-pity in firm check.

 

One of the sad ironies for my family is that my 97 year old grandmother( who still lives idependently) is having to witness her daughter's decline - she's been talking about moving in to be her full-time carer!! - we have been talking her out of it!

[Jones]

Well I cannot navigate this site very well. I was showing my daughter the guilt and rage post from gonnamakeit to see if she could better understand what was going on in my head, and realized I had confused gmi for wagtail in one of my posts. Oops.

Once again, glad to know you are here. I can get grounded reading here.

I was sitting in the Verizon store when someone held up a wallet and asked if anyone had lost it. I had dropped It in the parking lot and didn't even know it. I was so grateful it brought me to tears, of course. We started talking about painting, something we have in common. She had just installed an art studio and invited me over to paint. Then she started talking about a large fence she was building to keep her husband in because he has alz. Then she told me all the meds he is on. Cymbalta was in there.
It was an interesting and great morning.

Yay!

[FiveNotions]

Wow, Jones...that's amazing and wonderful....from a dropped and almost lost wallet (due to crapalta), comes a new friend, with whom you share painting and the challenges of taking care of a loved one with alzheimers....and whose loved one takes Cymbalta...that's a gift...a treasure....can't wait to hear about you painting in her studio!

 

You need to post this over in "listing the positive events" .... it's a real inspiration!

[Wagtail]

Jones , how wonderful for you your guardian angel has sent you a possible friend to guide you .. So happy for you ... I hope God sends me someone too ...:-)

[Jones]

FN. I will repost if I can figure out where it is. You think the constant loosing things Is cymbalta related ? Sometimes I can barely speak to people because I can't come up with words.

And WT if you were a little bit closer. . .

[FiveNotions]

not to worry, I'll find the link for that thread and repost it here.

 

and yes, the swiss cheese brain is, I'm convinced, due primarily to Cymbalta ....prior to this withdrawal stuff, I seldom lost things....knew right where things were, never lost my keys, etc etc....since I got off the stuff I've locked myself out of my apartment several times, went shopping at the grocery store only to discover I'd left my wallet at home, left stuff on the subway, lost my bank ATM card, on and on ....

 

as FH notes above, memory loss has also been connected to wellbutrin, and valium/diazepam is known for causing memory problems....and I surely can have some of that adding to this....but I do believe that the primary culprit is the poison....

 

I also believe that it will improve over time, slowly, and perhaps with some cognitive exercises of some sort when I feel a bit better....even crossword puzzles, or some such if I can find a professional to help me....but yes, I believe it will improve....I may never be what I was before all this, but I don't think I'll remain what I am now, so to speak....

[Jones]

Thanks FN
Funny. I was at that Verizon store to trade in my new phone because I couldn't figure it out. What a surprise !

[FiveNotions]

Here's that link, Jones..

https://www.cymbalta...alta-withdrawl/

Oh wow, that last piece of the story makes the whole thing even more hilarious!

I just love knowing I'm not the only one who does this stuff :-D

[Jones]

I think I got it on there maybe even twice.

Okay. The other day I went to the nearby lake where I go to walk and clear my head. I went about a mile and was feeling pretty good about it. Took me twenty to thirty minutes. When I got back to my car I see I didn't turn my car off. I Left. It. Running all that. Time.

[AnotherMind]

Jones - if it's wonderful gift of honesty and coincidence with your wallet story! If it's any consolation I've  had the loosing words (and things!) BIG time right through withdrawal. Swiss cheese brain indeed! Also NO short term memory. I think the stress of this vagueness + cymbalta withdrawal compounds itself. and so we go round in circles.

x

[thismoment]

Here's a short, allegorical story.

Bill, a musician, had his guitar amplifier melt down and catch fire on stage. Being the consummate craftsman and having more time than money, he chose to rebuild it. It was an older tube-type amp and the wiring diagram Bill dug up on the Internet seemed iffy. Bill went to work in earnest. A week later he emerged from the basement cradling the little amplifier in his arms.

"It's done!" Bill said, "Let's plug it in!" The little red light came on and the speaker went, "zzzzzzzzmmmppt!!" The little red light went out. "You smell that?" Bill said. A tiny wisp of white smoke wafted up from the back of the ailing little amp.

After a few days of trial-and-error Bill got the amp working. "It works great-- sounds better than ever!" Bill said. "The wiring diagram was no help-- it was incomplete, so when I re-wired the brain-- I had to just wing it. But for some reason the little red light doesn't come on any more. Weird. But I think I can live with that."

[Jones]

I attended the meeting. It was kind of cleansing. I will go again.

[FiveNotions]

Wonderful, Jones!

[AnotherMind]

Down the well of sadness again - no light, no words, seemingly no purpose.

[Wagtail]

AM I'm feeling the same way today , but keep reminding myself that just yesterday I felt a little better & will most likely feel a little better again tomorrow ... There is always a reason to not give up !!! & tomorrow might just be that day ..:-) you are stronger than the bad feelings that you're experiencing ... They are just FEELINGS & can be fleeting & transient . We just have to keep moving forward ... Be strong my friend because I need you to be ..to keep me going too ..:-)))

[AnotherMind]

Dear Wagtail

sad that your'e there too - feel like a little pebble that's sunk to the bottom of a great, black ocean.

I saw a great quote in a book yesterday : Trust in emmergence.

 

taking a deep breath and hoping it passes for us both (and all those who are being tossed in this ocean.)

[Wagtail]

Dear AM , I'm giving in to it & letting the feelings wash over me ...watching Agatha Christie on tv to try to distract myself & breathing very slowly & deeply & counting my breaths ... It seems to calm me ... We will get better, it's a given ..xxx