Speaking freely

PlentyQuiet

Hello

DH was diagnosed officially November 2021 with EOAD, but showing signs for a year prior. He is early stages: still drives to a men's game group and volunteering. We have all papers, needs, and documents in order, and that is where I feel the burden.

All decisions are on me: managing money, insurance, calendars, doctors, technology, household maintenance, car maintenance, taxes, the list goes on and on. And this is without him being at the stage where he needs hands on care and constant supervision. 

So I'm using this space to say what I can't say to the general public: DH has a fatal disease that will rob him of so much of himself, but it's pretty burdensome for me too. Whew, that felt good.

Family, friends, neighbors and teammates have been told about the diagnosis and my spouse has received endless sympathy and praise for his current attitude of "I can't change it so I'm going to live while I can". I agree that is a great mindset and we are living with an eye towards joy in the moment. 

However, not one of these people have turned to me and acknowledged the strain this will be on me. Not in the moment, and not in private later.  It feels like whining to say I'm still here and my life is equally turned upside down. 

I'm not seeking solutions, I'm just putting it out to the Universe that I am still here and I'm carrying a huge mental workload, and later will be shouldering a huge physical workload. 

If you have read this far I thank you for listening. It is a relief to post things I can not say in real life. 

DrinaJGB

Boy, can I ever relate to your post. Welcome to the club nobody wants to be in.

 Our horrific journey started with a viral brain injury and has evolved over time with so many twists and turns it leaves ones head spinning.

  I have been chief cook and bottle washer, maid, legal secretary, medical advisor, accountant, nurse, and companion now with virtually no acknowledgement from friends or family or DH of how much this weighs on one's shoulders year after year.

  It is disheartening to say the least. At times one just feels used and abused and totally taken for granted.

If it weren't for my dogs I honestly do not know if I would still be here.

Now approaching 12 years with no end in sight. I cannot even remember who I used to be or who he used to be anymore.

You will toughen over time, but it will change you.

Quilting brings calm

Plenty 

Welcome to the forums.  We are pretty honest here and you are welcome to virtually vent in anonymity. No one is going to tell you that you are selfish or that it’s just your responsibility.  

Yes, it’s early in your spouse’s process. That doesn’t mean your life hadn’t been negatively affected already. It is hard taking on all the responsibilities that either weren’t yours or were shared with him. It’s hard being on pins and needles watching for that symptom that will tell you he’s slipping further. 

Make sure to take time for yourself somehow. 

Driving is going to become an issue.   

jfkoc

Well we understand but I do not think you will get much understanding from anyone who has not been a long term caregiver.

Stick with us here and say whatever you want to.

Byteguy

Actually, you can say these things in "real life."  If you go about your life putting on a good front then you are being unfair to yourself. People used to ask me how my wife was. I thought that all I had to say was "she's OK" or something like that. It never occurred to me that people were noticing that she was not really OK. It's so hard to know if people are just being polite or if they really care about you and your spouse.

Now I tell people that she is doing as well as expected and if I know the person who is asking, I can elaborate. Many times these people will ask how I am doing. We have a really caring community and a number of people have asked if I need help. I was rather reluctant to ask for help, but when I reached out to these folks, I found that they are, indeed, there for me.

Don't know if this helped, but this is a place where we can share what is going on in our life and it can help us bear the burden that we carry.

Mint

Welcome.  They have no clue what you are going through.  The probably won’t want to hear too much about it either.  Accept they simply don’t know.  Come here when you need to talk quite a bit and have people that understand.  Try and keep some relationship with them if you can.  You will need a little normalcy if possible.

Lizzielou

I feel the same with all responsibilities falling on me.I’m barely keeping my head above water, following him around all day putting out little fires, trying to keep him out of trouble.  I’ve taken over many chores around the house (which he criticizes endlessly) , am making all decisions, must do all planning.  He doesn’t want me to get any outside help and refuses to cooperate or do anything he thinks is unnecessary like going to a new doctor.  I have lost a lot of sleep worrying how I am going to keep this up.  I hope as we settle into this “new normal” it will get easier. 

My only advice is to take care of yourself, adjust your attitude and expectations, simplify your life. I’m sorry you are in this caregiver position but this forum is really helpful.  You can do searches on nearly any topic.  Best wishes.

Gig Harbor

Plenty I could have written this but probably not as articulately. I get so tired hearing about how hard it is for our LO. My husband is actually happier than I am and he really has no idea of how much ability he has lost. He never worries about money, paying bills, house maintainance, doctors appointments, filling prescriptions, buying groceries, cooking, laundry, yard work, car maintainance, keeping up with family stuff or anything. When my friends ask how he is and I give them a little glimpse into his life they often counter with how much they forget now. Please! If you can remember that you forget you are 1000% better than he is. I am finding that my friends are now mostly the people in my support group.

storycrafter

Dear Plenty, glad you have found this place. It's been a lifesaver for me over the years. You'll always find support and empathetic listening ears here. I hope you'll find some comfort and peace as you navigate the difficult journey with us.

The first years, getting to diagnosis and then finally having confirmation of it, are some of the hardest. It's a huge and shocking shift in life with a sky-rocketing learning curve that can take our breath away. It takes time to get our minds around a new reality, takes time to build a new support system. Perhaps most significantly, it takes time to learn a whole new set of skills, like, how to mourn and grieve in the unique way caregiving of loved ones with cognitive illness demands of us. Learning to do this enormous task is crucial for our own mental health and no one can do it alone. I'm so grateful for this forum that really does make a difference.

You're in lots of good company here. We do it all - ask questions, share stories, sort out things, vent, cry, lament, ruminate, give thanks, chuckle and laugh. We hang on to each others hands for the wild ride and do it one day at a time, sometimes one minute at a time.

(An aside re the mechanics of the site: On rare occasion a message can get dropped when you click to post it. I've taken to copying <control C> the longer notes I write before clicking post, just in case.)

Best wishes and big hugs to you and your husband.

John_inFlorida

I understand how you feel, its been over 9 years now, and I do pretty much everything. I think my DW is relatively happy and I don't think she even notices all of the things that I need to do. It's not how I imagined retirement.

abc123

Welcome! I am glad you found us. You will receive plenty of love and support here. Being a caregiver is not easy. I'm sorry your husband has this awful disease and I'm sorry for you too!

Ed1937

PlentyQuiet, welcome to the forum. Sorry you have a need for it. You said "We have all papers, needs, and documents in order, and that is where I feel the burden.". I'm assuming that this was done through a elder law lawyer, is that correct? If not, you really need to see one soon. Don't wait until it's too late.

Just about everyone here does everything, including things we never did. And yes, it's hard. And it gets harder. You just have to take care of yourself first. If something needs to be done when you don't have time for it, consider if it can wait. It's not necessary to keep a house in magazine worthy fashion. If dishes are dirty from yesterday, the world will not fall apart. The more important thing is that you make your life as easy as possible. 

Keep posting. Most of us have been there, done that.

Rescue mom

I second 1000% what Gigharbor, Drina and Lizzie said.

But to start, you are not alone in how you feel, so many have said much the same on this forum. It’s unbelievably hard, physically and emotionally, and no one knows what it’s like to be a spouse in such circumstances unless they’ve done it. This is the place where others do get it.

We basically lost our lives—I really liked mine—and we have the painful ability to know what’s lost (unlike DH)

IME people will ask “how’s he doing” but if you say much, they’ll change the subject real fast, or say something like “ha ha I lost my keys this morning” or “my husband doesn’t do much either, he’s lazy, that’s just men.”

Be prepared for many friends and family to vanish—being around someone who can’t make conversation or remember anything is not enjoyable, and my world is much smaller too. But you may also be surprised at the new ones you’ll find, especially through support groups who know what it’s like. I worked hard at keeping up with a few friends, getting out for normal conversation. But I’m listening more than contributing.

I am absolutely positive this is harder on me than my DH, who appears to have not a worry or concern in the world. My therapist, who counsels a lot of dementia spouses, says she doesn’t know how we do it, but she does know it takes a toll. You have to do what you can, for yourself. I pay somebody so I can vent without being called a whiner, or drama queen,w hi how happened.

It does get easier after a few years, but (as someone said) it changes you as well. I often wonder how I’ll function around normal people if/when I’m not in this situation. There was a big thread about just that maybe a month ago.

One thing about physical chores I keep remembering is what somebody here once said: things don’t have to be perfect they just have to be good enough.

Losing your person for daily conversation or memories of what you did together, or knowing that special phrase or look, is far harder.

arizonadianne

Welcome! I agree with you and and I loved reading everyone else’s words. I’m new too so I don’t have much to offer except my love & acceptance of you as you board this bus and ride with us.

I Hate This and I Hate That I Have To Do Everything Myself and I value your honesty too. It’s not whining, it’s the truth. 

I will also learn, grow into the task, and be changed. What is life, if it’s not change? 

PlentyQuiet

Thank you all so much for your thoughtful words. It has been a stressful week and that led to the venting. For context I just turned 50 and I have two kids in their late teens. I'm learning as I go with the Alzheimer's journey as well as helping my young adults begin to leave the nest. In a pandemic. 

I'm a planner by nature and I have a dubious talent of trying to stay one or two steps ahead. It is great for paperwork, but makes it difficult to live in the moment. I see a therapist weekly, but she is not living the same caregiver life. It is nice to connect with people in the same boat.

Kibbee

I have a friend who recently cared for her partner at his end of life.  She told us about having to deal with his inability to walk, falling and needing to help him get back up, and the fact that he became incontinent and she had to deal with disposable underwear, pads and bedding / clothing changes.  She did this for three weeks and then he passed.  During this time Hospice was on board, delivering and setting up needed DME and supplies, and providing care support.  Plus her family & friends organized and rallied round to be with her in their to provide hands-on help, prepare and deliver food, grocery shop, do laundry, shovel snow, etc.  

She told us it was the hardest thing she ever had to do.  

I listened and of course made the appropriate sympathetic noises, but all the while I was thinking ... "You did this for three weeks.  With round the clock hands-on help."  

OK - I do realize that on top of the actual caregiving, she had to deal with the emotional component of her partner's imminent death, and that certainly adds a significant degree of difficulty.

But I can't help but notice the difference in the amount of help, assistance, support and sympathy that is provided to a caregiver facing a short term crisis, compared to the scarcity of those things when a caregiver is facing the years-long and extremely challenging journey of caring for a PWD.  Why is that?  

Shevie

I totally get it!  One day at a time. You also take time for you.

Shevie

Kudos!  Well said.

Cookstownlad

Although my situation is somewhat different, I completely understand your frustration at having your challenges ignored or minimized during this incredibly difficult journey.My DW has been in an MCF for the past seven months, but neighbors who know have known us for decades only inquire of her condition if we happen to meet in a public setting.When they do ask, I simply respond, “ As well as can be expected.” Rarely am I asked how I’m doing and whileI don’t display my sadness and disappointment, it only intensifies the pain that’s with me as I try to provide all the love and support I can to my love of 53 years.

Newbernian

Welcome, Plenty Quiet! I was able to relate to everything you said until I read your second post.  Oh, my dear child and I don't mean that in a disparaging sense.  You are only 50 and have two children who are still looking to you to hold it all together.  I am so glad you found this forum.  I don't post often but I do stop in for a look now and then.  I turned 70 on 1/11 and my DH didn't remember.  I know a lot of husbands don't remember their wives birthdays but with a date like 1/11, he would have had a hard time to forget it. I would have seen to that . So I was having a pity party that with Covid, I couldn't take us out somewhere nice to eat and I ended up ordering take out pizza from the shop down the street and it wasn't that good.  Yesterday we took down the Christmas decorations and that turned into a disaster.  He went to bed around 5:00.  I realize his Donepezil isn't working as good as it did when he started taking it 10 months ago.  I knew it was temporary but I was hoping for more time.

Enough of me.  I just want to say you are my reality check.  I hope they find a drug that will reverse this awful disease soon.  It's too late for my DH but maybe there is hope for you and your Loved One. Don't ever feel that you must hold back.  Believe me you are helping us all by sharing your frustrations. You will give us the acknowledgement that we are not the only ones feeling cheated out of "growing gracefully old, together".  I used to wonder about the couples who have murder/suicide pacts.  No, I'm not letting him off that easy.  I will do what I can to make him as miserable as me if it gets too much.

Give yourself 100 hugs from all of us.  Because that is what we would do if we didn't have our computers standing in the way.

Buggsroo

Plenty,

I totally get what you are saying. I feel the same way. 

I was at my doctor’s office and talking to her about my husband. She said she was sorry, laughed ruefully and then changed the subject. A lot of people do that, there are only a few people I can talk to about my hellacious life as a caregiver, those people are either other caregivers or have had other similar experiences.

The forum is a great place to vent, cry and even sometimes laugh. Welcome.

Iris L.

Welcome PlentyQuiet.  If you have a bucket list, do it now if you can arrange it.  Also, see if a trial of the memory meds can help him.  

Iris L.

Crushed

Lots of nice warm words from the nice warm people here.
please please please fill in your profile with state ages etc. SSDI etc
  

Let me just add that Anyone with dependent children needs very special legal help  
 

https://www.ssa.gov/benefits/disability/family.html

Beachfan

Rescue mom wrote:

I am absolutely positive this is harder on me than my DH, who appears to have not a worry or concern in the world. 

I agree 100%, although for a long time I found it hard to say this too often, or too loudly.  Friends, family, acquaintances would say, “Poor DH, what an awful disease!” I would think, but never say, “Poor DH, my @%$! He doesn’t have a care in the world.  He’s happy as a clam and I’m running on empty.”  DH has been in a MCF since Nov. 12 and he remains happy as a clam, well cared for and I am no longer running on empty.  I thought and planned and prayed that I would keep him home until whenever, but something had to give.  I love him, I miss him and I wish I were braver and more perseverant, , but I won’t apologize.  He is content and I am slowly reclaiming what’s left of my life.