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satchbee
Posted: Sunday, October 13, 2019 3:31 PM
Joined: 7/15/2019
Posts: 18


My DW of 39 years was diagnosed with moderate ALZ in July of this year. The diagnosis was a relief in one way: it explained her behavioral changes over the past two years. - while I am slowly availing myself of the myriad (thank God) ALZ services here locally and also involving our rather large pool of friends and family (thank God), and we are trying Aricept, I am still awake deep into early morning almost every night. I stream TV for hours, eat too much, and cry...endlessly cry. There is just no way I am doing everything right...for example, although I handle all her meds, I thought she might be able to handle the Aricept at night...then, I found she had not taken any for a week! I am SO stupid...why did I think that? Why did I believe that false hope...and will I do it again....and am I hurting her? My mind goes round and round...I review every decision over and over because I feel so...incompetent. After all these decades...oh, and here I am crying again, my newest favorite activity...I want to make her happy in the moment...keep her safe, loved. -- I am putting together a wedding anniversary party (our 5th anniversary) for us and our best friends...I want them to see her now, while she remembers...but, as for me...I feel like such a failure...and I feel selfish for thinking that. And I keep crying, even when ordering condiments. Oh well, kind of a mishmash here. I feel...overcome or something. Help!
lauri.massey
Posted: Monday, October 14, 2019 2:31 PM
Joined: 6/6/2017
Posts: 14


Oh my, you are not a failure.  The crying will dissipate, but will rear it's ugly head at times.  I am happy that you have so much support; use it when you can.  It is a hard road when you are the primary caregiver, as you will see every single change, and wonder if it was part of the disease, older age, or a permanent change.  Does it help to know that I understand?  That Aricept helped my wife's memory?  That I also feel grief daily?  One thing that helped tremendously was accessing Pill Pack, which has every day's medication, separated by time.    It is delivered and the expense is minimal.  It allows her to have some form of independence although I monitor it at times. Please know that you are not alone, and that there is an abundance of support on this site.  Most people use the Spouse/Caregiver forum to post, however I check this once in awhile, because living in a same sex marriage presents its own challenges.  I have received a tremendous amount of support on Spouse/Caregiver forum and recommend that you post there too.  Gentle Breezes, dear one.  Condiments are overrated!
satchbee
Posted: Tuesday, October 15, 2019 9:05 AM
Joined: 7/15/2019
Posts: 18


Thank you lauri.massey for your kind and informed reply. I have been reluctant to post on the Spouse/Caregiver Forum...chalk that reluctance up to a lifelong fear of discussing anything pertaining to my treasured relationship in the straight world. I...have not wanted to let the world get to the soft, beautiful stuff inside as regards my DW. However, with your suggestion and my growing comfort with support services here, I will give it a try. Thank you. -- It helps immeasurably to know that you share my experience. And thank you for the reassurance that I am not a failure. Perhaps I need to change my perception...I read through these posts and realize that we, as caregivers, are doing our best...we are all trying so hard...that failure should not even be in my vocabulary any more. Thoughts? And thank you for the tip on Pill Pack. I will check it out. - again, thank you for being here...we share the long goodbye. - well, it is daytime now, and off I go to rake leaves! October beckons. - God speed, lauri. massey.
Jo C.
Posted: Thursday, October 17, 2019 9:20 AM
Joined: 12/9/2011
Posts: 10316


Hello Satchbee and a very warm welcome to you.  I am truly and deeply sorry for what is happening and understand your heartbreak.

Satchbee, when dementia hits our Loved Ones, (LOs), we are all on  the first rung of the dementia learning ladder and it takes time.  You are a very loving and giving spouse and are doing the very best you can; you are on the right track and you will find as you move forward and gain knowledge, you will find much understanding of all the dynamics.  We all fly by the seat of our pants in the beginning.

When this diagnosis happens to our LO, we often find much grief; that is part of the process.  Guilt also can rear its head, but there is nothing to be guilty about - perhaps a bit of regret - but not guilt.  You are learning well and doing very well under the circumstances.  You are already a very good advocate for your LO by looking for support and information by coming here.   

I echo the advice of lauri in inviting you to Post on the Spousal/Partners Forum. Please do that; you will not regret it.  You will be welcomed with open arms.  There are already several same sex spouses and partners on that Forum and it is all good. Truly.  As it is, this Forum does not get much traffic so to speak; you will get much more input on the Spousal/Partner Forum as it is so much more well attended.

We are all here in support of one another and that now includes you too!  Every single person with dementia is different; one person's experience is not the same as the others.  Not all have dread symptoms, some lead an easier course for quite a long time. 

Here is a link to a good reading,"Understanding the Dementia Experience," by Jennifer Ghent-Fuller, a dementia specialist; it is worth reading from time to time:

http://www.smashwords.com/books/view/210580

Also, the Alzheimer's Assn. has a 24 Hour Helpline at (800) 272-3900.   They are available 365 days a year.   If you call, ask to be transferred to a Care Consultant.  There are no fees for this assistance.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are great listeners, great support for us, have much information and can often help us with our problem solving.   Just one more tool in the caregivers toolbox.

So glad you have found us and hope to see you on the Spousal/Partner Forum.

J.


lauri.massey
Posted: Thursday, October 17, 2019 10:20 AM
Joined: 6/6/2017
Posts: 14


You are a beautiful, poetic writer.  I look forward to offering and receiving support from you.  I think our spouses have some similarities.  Gentle Breezes.
satchbee
Posted: Friday, October 18, 2019 5:52 PM
Joined: 7/15/2019
Posts: 18


Dear J. Thank you for replying and for your reassurances. I am seriously considering the Spouse/Caregiver forum. Your confidence in this venue, and Lauri's assurances are improving my comfort level. - I had a bit of a set-back this week; I had posted on my FB timeline re: our 39th year anniversary which I hoped would make people happy...then one 'friend', now unfriended, laid down a whole pile of Biblical malarkey about my marriage. But, luckily, all my friends and family came to the rescue. And I must not let the vitriol of one poor, lost soul, dictate the direction of my life...or feed my fear. This has provided an impetus for me to take advantage of the caregiver forum! -- and, next week I am going to my first small support group meeting, just a couple of blocks from home. -- Thank you and Lauri for being here. This strange loneliness, even when with my DW, is moderated by the knowledge I can speak with you and others, in complete and cogent understanding.
satchbee
Posted: Friday, October 18, 2019 6:22 PM
Joined: 7/15/2019
Posts: 18


Chalk the writing up to growing up in a family of journalists! - well, I've posted in the Spouse/Caregiver forum for the first time. Concerns about sundowning and activities. - many thanks to you lauri.massey and J. for being there in the wee hours when I turn for comfort to this wonderful hunk of plastic that is my laptop.
 
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