I am not ready for this

Rumer Jane

I’m a private person. Regret doing this. Not continuing.

Novice AD Partner-Ca

Hello Jane, I don't have a lot of experience - you have known and seen more of this disease than I have - but my partner was diagnosed a month ago (longest month of my life) and I am 58 too and I go through feelings like you are expressing here, it is the most gutting feeling. It feels, at times, as though he is going through this and it must be awful for him, but it is ending my life too. I came on this site to try - like you - to get more of an understanding about how I could cope with this, but it all sounded so awful and scary and depressing that I have not really been back much. In the past 2 - 3 weeks I have thrown myself into so much distracting activity because I just can't bear to think about it. But whenever he and I try to do things together, his fading  and scrambled mind shows itself to me again, and it's just overwhelming. So all I can offer is "me too" which I guess is not much help. I am not the nurturing kind either, and I don't even have kids, so being responsible for someone else, someone who is an adult and used to be my basically only friend (we are both quite antisocial, family aside), my intellectual equal, co-adventurer... and now just really struggles to understand anything and to express himself. It is heartbreaking. Has your husband actually been diagnosed? Or are you just knowing what it is from your own experience? Could it possibly be something else? I am going through things like getting Power of Attorney, and applying for a disability pension for him, when I was ready to spend the next two years pre-retirement planning our adventure travel for our 60s. I just cannot believe, a lot of the time, that this is actually happening. It still feels very, very wrong. And when people say their loved ones lived for 10 years with this, I am absolutely horrified. I can't do it either. I am not ready for it, either. But my partner and I are still having some happy moments and fun, lots of it actually. It's more the foreboding and the responsibility that is bothering me, and having to involve other people, strangers, in our life. I want to escape. But many other people get through this, so we will too I guess.

dayn2nite2

If you know you cannot do this my advice would be to divorce as soon as you can before he loses all capacity.  

I can't tell you how to make it okay for you to do that.  But you sound very definite that you cannot take care of him and no longer find meaning in your marriage.  

I will also say that if your daughter has an organic brain disease she could develop similar symptoms.  You should decide whether you will be able to take care of her or find meaning in that caregiving relationship.

As time goes on and people with Down syndrome live longer, they also are developing dementia at fairly young ages.  You may be alive for your grandson's disease, if he develops it.  So you would need to decide what to do about that caregiving relationship.

Under the circumstances, your granddaughter will have to be first priority and that would be also with the understanding that with 2 parents with schizophrenia, there is a likelihood that she will have it too.  And again, you will need to decide what your role will be there.

Rumer Jane

Thank you

Rumer Jane

Love is and has always been my go to.

Jgirl57

Rumer and Novice, 

Glad to see you both here and able to connect.

No matter how you decide to care for your loved ones, you do need a 

support system even if it is through this virtual forum. 

Rumer Jane

~All the best~

Rumer Jane

All the best to you..

harshedbuzz

Rumer Jane wrote:

Hi Dayn

I’m going to try to respond to you as well. I have to say that on my first reading your response came across as being cold and cruel. Usually when people are being vulnerable and reaching out for support they are asking for sympathy, understanding and compassion (walking alongside of). So I chose to ignore your post, or at the least, be thankful for my loving family.

Hi and welcome. 

That's quite a lot you have on your plate. That's a lot of pain for one family. Many members here also have challenges in their families as well. It's especially difficult in EO dementia where a spousal or young adult child caregiver is trying to navigate being sandwiched by competing responsibilities. 

For my mom, the changes in my dad's personality in the early and middle stages were harder to bear than the grittier aspects of toileting and hygiene. She especially suffered around his lack of empathy and his apathy as he'd previously been a real doer. While I knew about his dark side as the non-favored child, he typically kept that under wraps so it was extra difficult for my mom to be on the receiving end of his criticism and general nastiness when she was assuming the full weight of running their lives. 

My mom is great with the littles but she's the baby of a large family and constitutionally ill-equipped to act as a caregiver. Initially she was in denial and then went through some real anger (dad had mixed dementia and one was brought on by his alcoholism after the death of my sister). But she did come around to a point where she managed. 

Reading this helped her a lot. 

understanding-the-dementia-experience.pdf (alzconnected.org)

When I read your post initially, I came away with the idea that you personally were responsible for keeping all those plates spinning in the air when, in fact, you have quite a bit of support. Perhaps dayn2 came away with that same idea.

FWIW, most of us don't include other family issues unless they are directly impacting our caregiving. But I can totally appreciate that you may feel differently.

In my case, I have mentioned my sister's death from AIDS but only in the context of how she had the same dementia he did in her final months and how it drove him to self-medicate with alcohol. I have mentioned my own son's autism because my parents' refusal to plan for their elder years burdened me in ways that distracted me from helping him launch fully into adulthood; I also brag on him because he has really stepped up to help my mom in her widowhood. My mentally ill niece who is currently in prison or my great nephew with severe cerebral palsy weigh on me emotionally but don't impact me as a caregiver. I am also Team-Synthroid-For-Lyfe since 1971.

HB

Rumer Jane

Leonard Cohen verse:

‘Ring the bells that still can ring

Forget your perfect offering

There is a crack, a crack in everything

That’s how the light gets in’

ghphotog

Beautiful Jane!

EVERYDAY

Jane, so sorry to hear so many tragedies in your family.  You must be a really strong person keeping everything in order.  If at some point, the situation becomes physical violence might be the time to consider MC for your own safety at home.

I do not understand the poster who advised a "divorce as soon as you can."   That's not something I would do to my DH.  But that's just our situation.

I wish you the best and be strong! 

danapuppy

JANE, your list of those in your life that depend(ed) upon you would be overwhelming for anyone. I came out with comments to NOVICE that were unreasonably direct and harsh, for which I apologized to her. My real issue was that strangers here were advising her to run or get an attorney, like someone also advised you. That just stinks. I don't know about you, but I could not deal with the guilt of that course of action. It seems you need the help of a geriatric mental health professional for yourself and your husband. And if you have a spiritual advisor spend time with them, too.

I'm not qualified to speak for your husband, so I can share my experience. Depression leads me to quick anger, frustration, and withdrawal from personal and social activities. Fear of losing the male role and being a burden in place of the provider would initiate depressive behavior. It's a sense of failure. Don't think it's just a guy thing? My wife (early onset Alzheimer's) fears failure as a wife and mother (her baby is 33) and it causes her depression.

So, get some professional help. Get the diagnosis so that you both know what you're fighting. Plug into your local eldercare community outreach organizations.

And when it comes to caring for your man...my wife, we qualify for senior discounts, is my new petulant child. Your right, it seems it not him anymore. There are times when I look into her eyes...I see the woman I love looking back and I get strength from that.

Denise1847

Hi Jane,

It doesn't sound like he has been diagnosed with alz/dementia.  It is possible to that something else is going on with him and he should see the doctor to address it.  Maybe it is treatable.  Use your relationship to create boundaries to get him to treat you better and to go to the doctors.  You are dealing with so much already so you are going to need to see that cooperation is going to benefit him.   

dayn2nite2

Please note that my response came solely from the statements in the original post with the OP stating they "can't" do this and that you are getting almost nothing from your marriage.

If you've changed your mind, then continue on.  But I responded to what you wrote.

dayn2nite2

Rumer Jane wrote:

My marriage is not validating any longer. What was once my strength has become my burden, and it only gets worse, from what I’ve read. I’ve never been a nurturing type. Yes, with infants and small children, who are needy and dependent, but those who can do for themselves… it’s not my forte. My husband has become cruel, uncaring, insensitive, and apathetic to our relationship. I don’t see how I could look after someone who treats me like this. I used to be what his world spun around. Now, I’m the target of his frustration. 

Please share your experience with me. I can’t find any support anywhere….

Just to remind you.  And recommending divorce for someone who feels as you do about your marriage is not UNsupportive.  

And yeah, it gets worse.  Much worse.  Pardon me for being truthful.

Rumer Jane

I asked for experience. Lived experience.

Crushed

let me try very gently

You are in an impossible situation so you have to see what you can CHANGE

My oldest sister moved from Texas to Pennsylvania to get  better medical care
Her grandchild in Texas is Transgender so the parents  are planning to move to avoid the hate filled Texas politics 
 
You have to focus on what you can CHANGE