Just Beginning the Journey

EvelynL

I am new here, and my husband is in the early stages, it has been progressing for about 2 years and seems the last few months is progressing faster.  I am 13 years younger than my husband, he is 80, I work full time and I fear I am not being a good wife because I feel my life will be over taking care of him.  I don't have many family members that can help, or want to.  I guess I just need to vent to people who may not judge me at this time.  I will just take day by day.

amicrazytoo

Evelyn,  Welcome to this place, it's a great place to be with many helpful people. This is certainly not the place any of us thought we would be at this stage in our lives. You will find an abundance of information here. What you can't find you can always ask by starting a new topic. I am 12 years younger than my DH, he is 75. He was diagnosed January 2018. It's been a difficult road to ride on, but with the help of this site, it has been invaluable to my sanity. Feel free to vent here, we may not be at the same stage, but we understand there are those farther down the road and some trailing behind.  Wish you the best!

John_inFlorida

Hi EvelynL,

Nothing you can do but take it day by day.  

It's probably good to vent and not hold things inside. My DW has found that she likes to crochet. It was something she did a long time ago. Things that happened a long time ago she can remember. Just not current things. Is there anything your DH used to like as a hobby? I guess it depends on what stage he is in.

This is a nice place to read up about others and see that your not alone

Ed1937

Evelyn, welcome to the forum. Sorry you are now dealing with this too. This is a great place to vent, and share experiences with others. People here understand what you are going through. Read some of the old posts too. There is a ton of information here.

Ed1937

I just read your profile. You said "I could use some suggestions for thinks to do.". If you would tell us the kind of things he was interested in, maybe someone could make suggestions for you.

EvelynL

Thank you for your kind words.

CStrope

@EvelynL.  Welcome to the most caring and supportive place.  I too am younger than my DH.....8 years.  He is 66 and was just diagnosed a few months ago, most likely either Alzheimer's or Frontotemporal dementia.  Either way...it sucks.  I'm still working, thankfully from home now.

So glad you've joined the group.  I find myself looking forward to reading everyone's posts.  It makes me feel just a bit better to know there are others out there going through the same things I am. This is not a fun journey, but with the help and support of the others in this group, it can make it more bearable.

anneleigh

Evelyn, welcome to our forum.  Sorry you are dealing with many decisions at this time.  Perhaps you can find an adult day care center that is open so he will have activities to do.  I do bring mine to one and he is having a hard time adjusting, but I am hoping he will give it a chance.  He only goes 1 day a week.  Since your husband is progressing you may want to think ahead how you will be able to keep working and taking care of him.  I only say that because it is so hard for me to work my part time job during the week at home with the constant shadowing.  I have even thought of quitting at times as I know that it is getting worse for my DH, he is in stage 6. ( age 67)  I am 62 and really feel like my life is slipping away and know I cannot keep up with the pace.  

Just know you are doing a GREAT JOB!  and go day by day~

Cherjer

I am new on this forum as far as posting but have been reading all the comments. Evelyn...I thinks it is really hard for all of you that are so young and dealing with AD. My husband was diagnosed with AD at age 73 and is now 78. He has the APO4 gene and does concern me that my son (41) may have to go through this journey and pray that does not happen.

There has been something that has bothered me when someone new is coming on this site...so many say "I am sorry you have to come to this site...". To me that is very sad and makes our journey even worse...perhaps we can welcome people in a positive way and rejoice they have found this site! 

aod326

Hi Evelyn. Welcome - you will find so much support, as well as practical tips here - and NO ONE will judge you! I think feeling as you are is quite normal. We don't know what has caused DH's neurodegeneration - it started with seizures, which led to a partial temporal lobectomy and it was a while afterwards before it became clear he was exhibiting symptoms of dementia. In general I feel like I've handled things OK, but the year after he had brain surgery (Mar 2018) my main feeling was resentment. I don't like saying that, but it's true. 

I resented that I'd lost my funny, vibrant husband, with whom I shared a love of travel, and sports. I resented that he couldn't keep up with conversation, so didn't want to go out with friends, and I resented that he always wanted to be with me, every minute. I resented that, in our fifties, we had been nowhere close to slowing down.

For me, the resentment passed. He's now deep in Stage 7, and I can honestly say I've never felt so much love for him. 

Good luck.

JM1316

Hi Evelyn,

Welcome!  This is a great site with awesome people with all kinds of different experiences.  Sounds like we are in the same position but my DH is 69 and I am 67.  I work two days a week in the small  CPA firm that our son is running now.  Flexible hours.  I will keep this pt job until he can no longer be left alone.   

I have posted a few questions the last 1-1/2 years here and they have been very helpful with answers.  I am still getting my life in order, saw the elder care lawyer last week again, selling beach rental property because I can’t do it and care for the husband, planning a move to a Over 55 community ranch home, getting all finances in order, next is selling husband’s car.  

Hang in there!

Dottie

GA-Mom

Hi Evelyn,

Please do not be hard on yourself about being a good wife. We all here do our best for our loved ones (LOs). I recommend you browse through the forum and search topics. It's all helpful! 

If you haven't done so already, please meet with an elder care attorney to get your financial affairs in order. Having a POA is critical down the road. 

Also read up on the Alzheimer's  Association site for a lot of helpful information. If you find a support group near you, many find that is a big help.  The AZ site lists them, I believe. Many have online support group meetings.

Feel free to ask any and all questions. None are dumb. None are embarrassing. We are pretty much over that. 

Cherjer

We all are dealing with the progression of our DH/DW in this disease. As I am writing this my DH is rearranging his work bench which I will have to fix later. I would say he is in stage 5/6. Once a successful engineer he is unable to read ,write, use the computer ,and all the other things that go with this disease. 

As I read all the heartfelt posts, I wonder why we have not progressed further in finding a cure for AD? After all, this suffering has been going on way before 1906 when this disease was given a name.  Yes, the scientists have a better understanding and there is medication that helps to some extent slowing down the disease. But WHY has this been so slow to find a cure or at least to really slow down the progression? 

My heart breaks for the younger people on this site who are dealing with EO...there are young children who have to see their parent suffer. Ones who are suffering with AD have no hope of surviving. And those of us who are their caregivers have unimaginable daily stress. 

i am very lucky to have good resources that help me better understand what the future holds for me. This site is especially an eye opener for all of us who are caring for our spouses. You all truly understand what a spouse goes through caring for their LO. 

jfkoc

Hi Evelyn...

We have two things in common. I was 12 years younger than my husband and I call Chicago my home base although Lake Forest was my actual home.

There is no doubt about the fact that your life is changing and is going to continue to do so. That leaves  you with how you are going to handle it...the sadness, the frustration, the anger, the resentment, the fear, the responsibility, the regrets, the......fill in the blank.

Bottom line, I think, is how to make the journey as easy as is possible. This means a couple of things. Getting medical/financial affairs in order and educating yourself to be the caregiver of a person with dementia.

The education will be ongoing because the care of your husband is going to require change.

You will not like your role but, for me at least, one does have the choice to commit to it or not.

The chances are 99% that you are not going to have a problem that is unique so post your questions and feelings here on any board you wish. 

We are going to understand and will reply with information and support.

 Will you like all of the replies? There may be some you do not like or agree with but please know all come from another person who cares. 

Above all please do not ever assume the worst will happen to you. It may but some journeys are easier that other so do not borrow trouble. 

                                               

EvelynL

I love all the replies, I do not know how to "Like" them just reply. Can you tell me how?

EvelynL

How do we over come the sadness of losing a partner and husband and become the caretaker?

jfkoc

I do not think that you "get over"  the sadness. What you are experiencing is grief...grief over a loss. 

Grief will come and go. Some days you may be grief free and then other days it will flow over you for no apparent reason. I do  not think there is much one can do to actually control it. You can stuff it down but it will come back.

Sadness is a normal but unwanted part of this as are frustration and anger. Just best to acknowledge and do share  here.....we truly understand.

CStrope

And sometimes not just grief and sadness, but also resentment and anger.  It's okay.....we all have a bunch of different feelings we go through as we deal with this!

Mint

You cannot like them.  Wish we had that feature here too.

Crushed

1.  

EvelynL wrote:

How do we over come the sadness of losing a partner and husband and become the caretaker?

I've been on this road 11 years. DW held the top position in the federal government in her medical area when she failed the clock drawing test at 58.  I first kissed her in 1972 and she has been my entire life.  We are now married 45 years. FWIW I was ALWAYS her caretaker , her partner, her support, her cook  and her cheerleader.  She was a genius who needed a wife    (I used to swap recipes with Marty Ginsburg) 

 But her career and the life we knew and expected was over.  For 7 years I frantically scrambled to make for her the best life I knew how.  I'm a year older.  Late 2017  she went into memory care.  With Covid I have not seen her since March.  Yesterday I cooked a dozen mini key lime pies.  I will take some in today.  It's been two years since she had the slightest idea of who I was. 

I was 70 last week and some days I wonder what life holds for me.  As my therapist said, "You were married to Wonder Woman, nobody gets that lucky twice"
 
So if you find out how to overcome the sadness, I'm all ears  !!     

POSTSCRIPT  I probably shouldn't post in the middle of the night  when I am feeling down.    Woke up , made brownies for DW and the sun is shining. 

I found a Valentine's note I wrote to DW about 6 years ago.

I first kissed you on a curb  outside the Theater where we saw Cabaret in 1972.  Since then I I've kissed you in at least 40 states, Egypt, South Africa, Costa Rica , Thailand , Australia, Bonaire, All over Europe , Kenya, Canada and Mexico. Not to mention in  Boats, trains, airplanes, Buses, horse wagons, cars, trucks, ferris wheels, ski gondolas, Camels, horses, underwater and the  top of the Eiffel tower.  I recall glaciers, volcanoes, beaches, forests, ski slopes, waterfalls,  RV's, tents, dorm rooms, basements and cheap motels.

   I never ever ever got tired of it.  

  So have a good day and grab what you can      

EvelynL

What a wonderful and encouraging post.  Thank you.

Arrowhead

If it has not already been done, get all of his legal work prepared. Power of Attorney; Will; HIPPA; Medical Directive. I also recommend setting up a trust. Do not wait too long. If he loses competence then it will be too late.

EvelynL

I find myself crying on the way home from work most days and I can't think of why except that I know at home it is the same day after day.  I have to remind my DH of what happened the day before and what we are doing the next day. I feel so selfish that it also upsets me.  I cannot control my emotions and do not want to use any medication.  This forum lets me vent a bit, thank you.

M1

Hi Evelyn, I'm so sorry you are having a hard time. There's an overlap for everyone between stress and depression. Don't rule out a medication trial if it might help you-would you say the same if someone were offering you an antibiotic to treat pneumonia? Just something to think about. This is a very difficult situation, and we caregivers must take care of ourselves too.

CStrope

@EvelynL, I cry a lot too.....and with COVID I'm working from home, so everyday is the same...all day.  I hear ya and I get what you mean.

I know how difficult accepting this new reality is, I'm struggling with it too.  I guess we just have to remember to do what we can and take it day by day.