Alone(5)

Dawnita Jo

I am so alone with my husband's nonofficial diagnosis. It is difficult because he is lucid but situationally unaware. I feel like I am drowning. He resists leaving the house though he can run errands at times. I tried reaching out to his adult daughter and she thinks that it is normal aging. It's odd that family refuse to recognize his condition. He is a good actor but I guess I've helped create this problem. I have compensated for his memory, hearing and understanding in a conversation for so long that I can't distinguish between our own thoughts. I've morphed into a necessary part of him. 

To complicate issues he's an alcoholic too. Is it the alcohol or Alzheimer's? Should I push for a diagnosis or keep his possible Alzheimer's hidden away in the same compartment as his alcoholism? I've tried Al-anon an it helped a little bit it just doesn't touch the surface of my situation. If I push him to get a diagnosis he will refuse to take medication or seek treatment. I am just busy covering up all signs of alcohol and Alzheimer's. I'm a fixer. Who can I share the truth with? I just make excuses for not going out, not visiting and not going on vacations with his friends.

I'm just boiling over with emotions: anger, guilt, fear, self-pity.

dayn2nite2

Stop compensating and covering up.  Stop pushing him to go out of the house if he doesn't want to.

Look up Wernicke-Korsakoff syndrome.  Could be either, both or both with alcohol-related dementia.  Who knows.

He doesn't have to "take medication" because nothing will cure him.

Keep going to Al-Anon.  Why do you feel that support "doesn't touch the surface of" your situation?  Part of seeking support is YOU admitting how bad things are and not covering up how bad things are.

Stop trying to convince his family.  I will warn you that if there is any money his children may want to lay claim to, we have a thread that will show you what adult children are capable of, up to and including getting guardianship of their father and forcing a divorce.

It's here:  https://www.alzconnected.org/discussion.aspx?g=posts&t=2147561308

Cathy123

Your post makes me wonder why you feel you must be his fixer all by yourself.  You said he has friends you turn down vacations with? How about letting friends get involved with the understanding process? 

You keep venting here where it is safe and where you find comfort on not being alone. 

Rick4407

Hello Dawnita.  Sorry you have to be here.  A diagnosis is nice but not essential.  Mostly it is tests to check for other problems.  If none are identified then it is assumed to be a type of dementia.  There is no treatment.  The drugs some patients take are used to treat the symptoms, delusions, depression, aggression, etc.  The brain continues to deteriorate.  

There are legal issues you need to get done.  You need to see a CELA, certified elder law attorney.  Google to find one.  

You should read here a lot.  There is lots of information that is shared among the caregivers here and also on the "Caregivers Forum".   Ask questions, people who have had similar problems will tell you what they have done.  It is a long and difficult road, Good luck.  Rick

  

Dawnita Jo

We already have a trust setup and it's been in affect for over 5 years, thank goodness.

Dawnita Jo

When he retired we left Oklahoma, all our friends and both our families. He is against going into the state of Oklahoma, for some reason. He won't even go visit. We don't have any friends or family here in Texas. If I want to visit my family I have to decide to leave him alone at home for longer than I feel comfortable doing.

storycrafter

Dawnita, the loneliness is so hard, and is magnified when family is unaware or in active denial. Also, the isolation one feels over the uncertainty of what's happening to your spouse and "not knowing," plus the absence of outside support, is difficult. All the feelings and thoughts you're having are normal in such a tough situation. You are beginning a new and scary journey.

Pat yourself on the back for finding these forums and reaching out by posting your topic. It's a steep learning curve, especially in the beginning, of learning to cope with dementia in your spouse. So be patient with yourself as you begin to allow others to help. 

A big plus is... you have come here where there's a great deal of very helpful information and support. It's the first step in starting to educate yourself and arm yourself with knowledge. You are not alone now and have lots of good, safe company in here.

Your mention of Al-Anon is of interest to me. It's great you're aware of the organization because it's another powerful resource going forward in your journey. (I'm a "lifelong" regular attendee of their meetings and am quite familiar with how Al-Anon works in many problematic areas of life, not just addictions.) When my husband began a startling decline into Frontotemporal dementia several years ago, I began applying everything I'd learned in those rooms to help me through the tough times with him. It continues to keep me going.

For one thing, I had to learn to allow others to help; am still learning to become more willing and comfortable with requesting it. Al-Anon is a great place to get encouragement and strength for difficult things, and also clarity about the pitfalls of Pride.

I've had to learn to begin taking on unfamiliar responsibilities that used to be my husband's; still am learning and adjusting all the time as things change. Figuring out how to balance giving my husband assistance in a healthy way, without enabling bad behavior, also working to let go of resentment, is a task I couldn't do without what I've practiced all these years in Al-Anon.

One of the biggest tools I use constantly and continue to build, is detachment with love, an important skill to use especially with loved ones. The feedback and support I receive in Al-Anon often saves me; especially when I get weary, lose patience, and perspective, my Al-Anon friends remind me about good decision-making, setting priorities, and letting go of what I cannot control.

I ask your pardon for going on this long. Thank you for the opportunity to think about some of the things I've learned on this journey so far. I will never forget how intense and heart-breaking the early days were when it felt like our world had collapsed.  I'm so grateful for this site which has saved many a day for me over the years I've been here. I hope it is helpful for you to know we are here for you, too!

Ed1937

Here is a link that might be of interest to you concerning Wernicke-Korsakoff syndrome. https://iv.iiarjournals.org/content/24/2/231 

BTW, what was my dog doing in Texas?  

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ElCy

The Trust you set up years ago may not be what you will need going forward as there are many different types of Trusts. Seeing a CELA is imperative! The sooner you do it the better!

PookieBlue

Dawnita,

Thank you for your post. Yours is the first post I’ve found that sounds like my life. My DH is also lucid, but situational unaware. For example, our house alarm was set off and an officer came to our door @ 12:30am. I know I don’t have him to watch my back as his response is always to just let me handle it.

He cannot run errands. The last successful errand he did for me was January 2020. I had been letting him drive (always with me as passenger) just to see what his ability was. He no longer drives as of July 2022.

He has an adult daughter with medical background (RN nurse anesthetist) and thoracic surgeon husband who are aware of his dementia, but live 90 minutes away and we don’t hear from very often. She and our SIL have two young energetic children and are busy raising. DH also has son and family in Omaha who haven’t been to the PNW to visit in over ten years.

DH thinks what is going on is normal aging, and always has excuses for his lapses by blaming eyesight (he won’t wear his glasses) or poor hearing (he has been deaf in his right ear since age 2 or 3, or “ I’m not awake yet. Like you, I have compensated for his decline for years and morphed into a necessary part of him starting around 8 years ago.

Alcoholism has always been an issue, and dementia plus alcoholism is the worse part of this challenge. It is a major trigger which I avoid. He hasn’t forgotten at all that he loves his beer and wine. He only drinks in the evenings, but with it getting darker earlier, he starts earlier and drinks more in a shorter time frame. I also am a fixer, but I can not fix this. His whole personality changes. There can be name calling and threats, and now I generally will leave the room and let him screw it out on his own. Sometimes, I have to go help him get to bed because he has fallen before and is very unsteady.

I don’t go out much at all, except to take him to his eye doctor for eye injections and to get my hair done every 8 weeks. I have been taking him to church with me most Sundays. He only asked a few months ago to go with me. I still keep us fairly isolated, but I will let people know that he has memory issues. He doesn’t know that and wouldn’t approve of me revealing that. However, since I take care of EVERYTHING and often deal with mechanics or others I hire for various things, I feel they need to know so they don’t give my DH the information that I need.

I just heard the term “Detachment with Love” for the first time on this forum. It is SO where I am in this process. 

Dawnita Jo, try not to hold your emotions in. Let them out. If you need to scream, SCREAM! (Not in earshot of DH). If you need to cry, CRY! As much as you need to. You are not alone and I can SO identify with you.

Your new friend , Valerie

storycrafter

A couple more good resources for support and answering questions and concerns that come up for you is your local Area Agency on Aging, and your Senior Center. Often the Area Agency on Aging has a social worker who can sit down with you and help you come up with a care plan. Or they can point you to good resources for whatever is coming up in your situation. They can give you good advice for problem solving and offer compassion that helps give you inspiration to carry on.

Speaking of that, strength and inspiration, I found it very helpful especially in the beginning, to attend the local Alzheimer's in-person meeting. (Now they also have online meetings you can go to.) They will have the best info on local resources and can also give you empathy for the caregiving job you're doing. Both practical and emotional support.

Chammer

*raises hand*  Alcoholic DH with cognitive changes - he is also diabetic so has regular check ups every 3 months - I've had his B1 and B12 checked regularly over the past few visits and they are always within normal limits - not sure how as he is eating less and less as his drinking is increasing and doesn't take his B super complex or other meds except sporadically.  He is still working and driving.  He always had a challenging personality and now it is like the challenging parts of his personality are on steroids.  In my Dr. Google research I found articles that show alcohol tends to damage the frontal lobe so that may be why personality changes are so significant initially, as opposed to memory loss - my DH memory is not good - definitely impaired - but not "dementia-bad."

I have done Al-Anon and Celebrate Recovery for several years - not currently active in attending and definitely need to go back - I just get so tired of "working on me" so I can deal with him   and yes... I often feel like I am DH's opposable thumb... it sure would be easier if he wasn't so angry, bitter and hateful all the time - even though I don't attend every fight I'm invited to!

Dawnita Jo

Valerie,

Thank you for the connection. Reading your post really heals my heart.