a different kind of grief

JDancer

I've been through a lot during my lifetime. Many challenges, some hard times, but nothing like this. It's a different kind of grief. Slow, relentless, all encompassing. So much loss- my husband, my freedom, my health(?), my future, my (free) time, my money, my dreams, my peace- on a daily basis. Every day, with no end in sight. I take on more responsibilities each day, while barely managing the current load. Trying to care for others, while my world collapses. 

I wish others (those not reading this, I know you folks get it) understood my life. It's hard, give me a break.

Rescue mom

I know (I think) what you mean. So much loss—not just for him, but for us, too—while the shell of the person you care for is still sitting there but the person is gone. Another thread here by Crushed also addressed this.

I am still deeply hurt by something that happened this week. A longtime friend stopped by—I’m grateful for that, many disappear —and friend talked nonstop for about 10 minutes. All DH did was say Hello, smile and nod, as he does to almost every and anything. But after friend left, he sent me an email, asking if maybe I got a bad Dx on DH Alzheimer’s, and asking why we, and me specifically, are “not doing anything” in retirement, because “he looks so good, are you sure anything is wrong.”  The fact that DH didn’t say more than maybe six words apparently escaped him.

Well, yes, he does look good, because I bathe him, feed him, dress him, give him his meds, got him out of bed to move around a little, etc etc. 

you are right, others really do not understand unless they’ve been here.

Crushed

Let me send you every kind of hug and support I can. The fall from the life your worked for and expected is so hard.  DW had just been appointed  to the top job in her medical field in the the Government.  I had taken Emeritus status to support her even more.  

Just take a deep breath and look at ALL your options.

M1

I get the same thing JD....those friends who still stop by say "but she looks so good" and "I thought she sounded fine on the phone."  Not here when she's counting and recounting the cats or can't find the forks in the kitchen.  When she can't write a check or spends hours and hours "doing the taxes" (read:  thumbing through old bills that need to be thrown away).  I am feeling overwhelmed by the number of things that need doing and my lack of energy to tackle any of them.

Rescue mom

M1, you summed up my week very well. In addition to usual housekeeping and food things, I’m dealing with taxes, car problems, and home repairs—things that DH used to do and really must be done. (Plus my own health issues erupted). 

Then somebody makes 10 minutes of contact and asks what I do with all my time in retirement, and “don’t you get bored just sitting around.”  And the never-changing “but he looks so good.” They never think about what their life would be like if their spouse could only do what yours and mine does.

JDancer

At least the deadline for tax filing has been extended!

June45

JDancer, I also get it and share your sentiment that most others outside of this dementia world really don't understood what we are up against.   It seems they think we spend our day looking for our LO's lost eyeglasses...like that is all there is to it.  I mean how hard can that be!  And for a long time, my husband would "showtime" for his sisters on the phone (long distance).   I think they thought I was crazy and had made up his Alzheimer's diagnosis.

Rescue mom

Making up the Alzheimer’s diagnosis is basically what someone told me his week, after a 10-minute visit, because “he (DH) looks so good.”  I’m still upset (and whined too much about it).

YAY tax extension!!

French

We all experience this. Before the diagnosis, as we were doing tests, we went to my parents. There was my sister. She told me « why are you worried, he looks perfect. I think you just stress him thinking he is sick ». Difficult to accept.

Last week, « you should have somebody at home 24/7 so you will have nothing to do ». She even can’t imagine how much it costs and how it is to have somebody in ones house, your bathroom, your bedroom, your kitchen. 8 hours per week and I already feel invaded, my children also... there is somebody in the kitchen when they want to have their breakfast. They go to school without breakfast.

But the ones I can’t bare are those who give advices. My sister in law explained to his parents how to behave with their son... she hasn’t seen for more than 2 years, living in the same town.

LadyTexan

I used to hear "he looks so good" quite a lot. At that time DH probably looked very good indeed. I was frequently very confused and doubted myself when I would hear that statement. I wondered......

• Maybe all the craziness in the house was in my head. 
• Maybe 5 car accidents in 13 months was just unfortunate. 
• Maybe all the hours and money spent on testing were frivolous on my part. 

Well that would have been a nice fairy tale. But the truth is DH has EOAD. DH has declined significantly over the last year.

My well intentioned family especially my Mom, sometimes still says he looks good or he sounds good. I suspect she thinks it will boost my spirits. As has already been mentioned, the folks that said "he looks so good" weren't the ones getting him bathed and dressed and fed and where he needed to be. Which as you all know is exhausting and can take hours.

Now that my husband is noticeably physically impaired I don't hear "he looks so good" so much. 

I love DH. He does look different than he used to. He still makes my heart skip a beat.

I think sometimes people just don't know what to say. However, they feel the need to say something, so these statements that are of so annoying fall out of their mouths. Its like verbal filler in an uncomfortable moment.

amicrazytoo

TL - you speak from the heart, I so appreciate your feedback and posts. God Bless You!

amicrazytoo

(((Hugs)))

Sonoio

I am new here. I've debated joining because doing so makes this real.

Even though we don't have a definite diagnosis...my husband's cognitive decline is real. I am still in the process of accepting this new part of our lives...sometimes he seems like nothing is wrong and at other times he's so different.

I am a special education teacher and just returned to teaching in person. My husband "retired" early because he could no longer work due to his memory issues.This saddens him immensely as he's worked his whole life and derived much of his self esteem from his career.

At times I am overwhelmed by what this all means, I try to stay in the moment and make the most of each day we have. Our family is not aware of the day to day stuff and I am not quite sure how to engage them in that just yet.

Thank you for "listening."  

Ernie123

Sonolio and Jdancer. A suggestion I have for you both that I have often made on this forum is to reach out to your local Alzheimer’s Society. If you are fortunate enough to have a good branch nearby you will find all kinds of support and resources.  Support groups are particularly useful where you meet with others who are dealing with, or have dealt with,  the same issues you face. Counseling with professionals who spend their careers helping families at all stages. Seminars where you can learn about the disease, how to respond and how to look after yourself as a caregiver. Personally my local society kept me on track especially during my final years of caregiving before my DW had to move to Memory Care. Don’t hesitate to reach out. One phone call will make the connection that may provide you with much needed support. You will soon find you will be able to help others which gives you strength to deal with your own issues.

CJ1961

((( JDancer )))

Rescue mom, youranecdote re deep hurt over insensitive 'friend's questioning re diagnosis just made me weep onto keyboard- I'd just posted after a long painful absence on littleme's thread 'suggestions please' something very similar, please know I empathise and feel for you. Here's a paste (because I'm too exhausted to rehash...) Love & hugs to all on this thread, Coralie, Adelaide, South Australia

Pasted -" So I've definitely given up on sugarcoating, and am most forthright with those who consistently irk me (euphemistic in extremis) with inane comments to DH '"You're gonna beat this, mate! You look so well!", or to me "You guys really prove love conquers all!!"  FFS. This from people who know 2020 wrought me twice COVID cancelled major bowel obstruction surgery, breast cancer, lumpectomy, then mastectomy 2 weeks later due to metastases, septicaemia and delirium, 6 days ICU and 46 days hospital over 5 admissions, no visitors COVID, plus 16 chemotherapy sessions, baldness and weight loss now 46kg (100lbs). So I'm not playing games any more, including even fishing for sympathy except for the 2 or 3 friends who've become more golden, and my 2 sons whose love and support sustains us both.  The rest I just answer it's horrific and relentless and I'm barely coping. "