Stopping by to update situation

Dutiful One

Hi, 

I've been around quite a while, although previously more active on the caregiver's forum. I wanted to reintroduce myself and describe the current situation.  Most of the information regarding my spouse is in my profile, so I won't repeat it here. 

The progression has been rather slow, and step-wise in nature.  There are others in the family that have had the same experience, same progression, at about the same age. Most of them have been diagnosed with some form of dementia. In the case with my spouse, there are medical conditions (diagnosed in the past year) that have helped put the pieces of the puzzle together. There may be no definite diagnosis, but the path is more clear and I can see it happening at some point, rather than the vague answers I'd been given before.

Right now, the main issues are the waning ability to make decisions, plan ahead, and organize. The ability to focus and concentrate is also diminishing.  At times, there are delusional behaviors that prompt meltdowns. Although oriented to time, date, and location, a lot of conversations and thought processes are based on experiences that happened years ago. Knows age, year, important dates, etc., but will want to relive childhood experiences and talks excessively about who caused a specific hurtful or traumatic event ten, twenty, or thirty years ago. 

We can have days or weeks of living with few or no symptoms, followed by days or weeks of symptomatic behaviors. One of my biggest stressors is the inability to have deep, meaningful conversations.  I work in an environment that was deeply affected by Covid and the shutdown. Although things are improving, there are still quite a few hiccups. I am in a leadership position and although I enjoy my work, it is becoming more challenging. Talking to my spouse about some issues and discussing a possible change is impossible. Even if I did seek another job, the change would be horribly traumatic to my spouse.  Making household changes is difficult, and to even suggest selling our home and moving to a home that is more amenable to our lifestyle is so upsetting that I've dropped it and am working to improve things where we are. 

Just having a regular conversation about anything, not just work, but anything, is often difficult. I have always enjoyed solitude and being by myself, but privacy and solitude are  very different than isolation and loneliness.  

Thanks for listening. 

Faith,Hope,Love

Hi DD.  I can relate to a lot of what you're saying.  I would love to move to a house that is easier to care for.  But I agree that it's such a challenge to make any kind of household changes.  I am trying to de-clutter as much as possible.  But, with everything else I have to deal with that's not happening too fast.  But that's ok.  Everything in its time.  And I totally understand the difference between solitude and isolation and loneliness.  I feel that loneliness a lot also.  Keep posting it does help.

KathyF1

Hi Deb, I’m somewhat new here so I’ve not seen your posts before. Just wanted to say I understand and can relate. Even though I’m with my husband constantly (he’s stage 5) I’m so lonely. No such thing as sensible conversation any more. He’s delusional and I have to play along when he tells me he knows Trump personally (just one example). It’s hard to feel happy. I under Deb.

Dutiful One

Thank you for your responses.  

There are days when I feel hopeful and optimistic, and others when I feel discouraged and hopeless.   Sometimes things seem to be going so well that I lose myself and attempt to have a conversation or engage in a decision, only to be brought up short when what I am saying is not understood and a situation ensues that could have been avoided if I had only kept quiet. Sheesh.

Faith, Hope, Love: I had to stop looking at real estate listings. It was just too depressing. Just to prepare my house to be put on the market would require more work than I'm willing or able to do.  One of my loved one's areas of decline is the ability to do household repair and maintenance tasks, something that were previously done with no limitations.    I'm decluttering, as well, and am focusing mainly on getting rid of things I no longer use and never will.  It's kind of hard to hide my actions, and in seeing me declutter old items, my spouse began hiding things so I won't get rid of them.  A childhood train set, for example, was removed and hidden, despite my assurances that I would never get rid of any of his possessions. I've never done so, but that means nothing to someone experiencing paranoia. 

Kathy, I haven't originated a post for a few years.  My mom passed away over four years ago after about a decade of living with dementia. She was originally told by her primary doctor that it was "mild impairment" and that she was "at risk" for full blown dementia, that the mind-sharpening activities she engaged in such as crossword puzzles were a waste of time and useless in keeping her mind active. The doctor read her my list of concerns in front of me and indicated I was acting inappropriately by trying to conceal things from my mother. This created a lot of difficulty early on, because she was experiencing a great deal of paranoia, among other symptoms. Later, a new doctor was more helpful and pursued testing, which revealed mini strokes and other medical problems, resulting in a vascular dementia diagnosis.  Down the road, the diagnosis was changed to AD by a neurologist. The primary doctor making the neurology referral felt that Mom had what was then called Pick's Disease (now known as a variant of FTD) but the neurologist disputed this and maintained the AD label. Down the road, FTD was confirmed.   It was quite a wild ride, especially in the beginning before I got her appropriate placement and help. During those days I was more active and posted on the caregiver forum. 

I feel like I've been on this roller coaster too long. There are so many similarities to both situations, but at the same time, a spouse and a parent are worlds apart. 

Faith,Hope,Love

Just read your response to my post and feel I could have written that one myself.  I'm going thru exactly what you mentioned.  Our house needs some work to prepare for market and I can't do it, nor can I have someone in to do it. It would just cause to much upheaval in our house.  So, I quit looking a real estate also.  I'm handling the maintenance as much as possible along with caring for 3 acres of property.  On top of that the car broke down yesterday (I had DH with me) and I had to get it towed.  Plus, we live in Florida, and I'm concerned about the hurricane heading our way.  I'm sorry I'm ranting on your post, but I'm tired and lonely.

Mint

Tired and lonely, understand.

D.Schuler

Hi, I'm new here how many of you write at less ten post before you actually put something up. I'm up to 4 thought I'd break the ice with this not use to sharing my pain.

Faith,Hope,Love

Welcome D.Schuler!  I've done the very same thing.  I was raised not to complain.  So, it's very hard for me to express my feelings.  But sometimes I just get overwhelmed like I am right now, and all of those feelings have to come out.  This is a very safe place to vent those feelings since we are all in the same boat and can understand each other's pain.

saltom

Welcome to the club. I think a lot of us write several replies before actually posting. I still do. This is one place where others have gone through your pain and understand how you feel without being judge mental and often have really good suggestions for dealing with the pain and surviving.

Joydean

Tired, lonely and no conversation! On good days I too get lulled into thinking I can actually talk to dh, nope. He has no idea what I’m even talking about. So I’ve just stopped trying. Certainly understand!  But no one said this road would be easy or pleasant. Try and take time for yourself!

ImMaggieMae

I understand how you feel. Not being able to have conversations like before with my DH is one of the hardest parts of this. I just babble on like I always did to him, knowing that he probably understands only a small percentage of what I say and seldom offers an opinion although he will occasionally ask for clarification. And then he probably forgets what I said. But that’s ok. I think it’s good for him to be part of things and this is a way of including him. He never seems to get upset about things that I say.

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storycrafter

Thank you, Deb. I'm so grateful you posted your update. You give me the words to describe my own situation. So true what you said about privacy and solitude being very different from isolation and loneliness.

I'm wondering what some of the differences are that you experience between your mom's dementia and your husband's. Your comment about that intrigued me if you care to share more about that. The way you express this experience with your husband and how you capture nuances in just a few words resonates so strongly with me. I cared for my father with Alz for several years, and during the time also caring for my dh who has FTD, slow progression like your dh, and should know what you mean, but words fail me. So many people say they understand just because they had a non-spouse relative with dementia. My heart tells me it's very different and more deeply affecting. As I write this it occurs to me it affects my relationship with myself most of all.

Thank you again, for taking the time to share here. It has blessed me this evening to read your words. Wishing you calm and peace....

choriste12

ImMaggieMae wrote:

I understand how you feel. Not being able to have conversations like before with my DH is one of the hardest parts of this. I just babble on like I always did to him, knowing that he probably understands only a small percentage of what I say and seldom offers an opinion although he will occasionally ask for clarification. And then he probably forgets what I said. But that’s ok. I think it’s good for him to be part of things and this is a way of including him. He never seems to get upset about things that I say.

I like this.  I think realizing that while there are commonalities, all people are different even with dementia/Alz.  This is how I was able to do with my mother for a while, and then she in turned chattered to me and I let her talk.  

Glad you all are here.  We're in an odd place, but then again, it's going to be odd going forward. It's comforting to read everyone's shares.

Dutiful One

Thank you all for the good discussion. I appreciate all the voices that have been raised in this thread. 

Storycrafter,  to answer your question about the differences I see. Each situation is different, of course. In my case, I didn't live with my mom, but I know others who lived with parents while providing care.  I provided a great deal of hands-on care and managed insurance, appointments, finances, care staff conferences, etc. It was a very difficult time. But I was able to go home at some point every day.    With my mom, I didn't mingle our finances; hers were complicated. I had to manage them, and it was terribly difficult, but at the end of the day, her financial situation didn't affect mine. I was able to continue working, both by choice and by necessity.  Over the decade of caregiving for my mom, I was raising children into teen and young adulthood, helping care for a relative's child, and working on my own career. I was a typical "sandwich" caregiver. 

In my current situation, I can't go home, because it's here with me. My children are grown and out of the house, with homes, careers, and families of their own. Deciding what to share with them is a challenge I face.   I have to think about and plan for the financial future and manage what's happening in the present. Retirement isn't going to be what I hoped it was.  I feel like I'm more personally affected in that way. I'm aware that my work situation may need to change, and I'm looking into what I need to do long-term. 

Of course, there are also differences due to individual personalities, lifestyles, age, etc.  In both cases, I'm seeing similarities such as delusional thinking, paranoia, symptoms that come and go. With my mom, giving up driving was a struggle.  It's been easier now, because I say things like, "hey, it's not fair that I never get to drive," or "I want to drive and have you help me navigate through this series of exits I need to take, so I can learn how in case I'm ever in this area by myself."  I'm slowly taking over driving through this method, and in fact now I'm usually asked to drive when we go someplace. I'm foreseeing an easy "takeover" there. I don't have to provide for ADL's, as those skills are still intact.  I'm seeing a lot of behavioral changes and some short term or situational memory loss. 

For a long time I questioned myself about whether I was seeing changes that weren't there because I was just hyper-vigilant after caring for Mom. I also hoped that this was temporary, something like a pseudo-dementia caused by reversable conditions.  I know now that it will not go away. I have had to face some hard truths.  I see it as a blessing that I have experience as a caregiver that is giving me insight into what is happening now.  

storycrafter

Thank you, Deb, for all your posts. I wish I had time to reply more thoroughly. We have a little family reunion I'm preparing for and I'm up to my ears. Dh is not helping much and his anxiety level is rising making it a little harder.

The differences you mention resonate with me, too. Your mom was lucky to have your help in so many different ways. Yes, it's another story when it's in your own environment 24/7. Thanks again for your response. ~Helen