Settling into the emotional reality of YOA

AlekoW · August 1

I got DW (61) registered with UCLA's Easton Center and waiting on a recommended Doc appt. HUGE relief!

Sitting up on a recent lengthy insomnia (anxiety induced) bout, she began sharing her fears with me about where this goes, how it goes, then tearfully, please don't leave me (My answer then and always: "Never! This is just another climb, Chiefy, I GOT you!"), I'm grateful I have you, fears & questions I didn't/don't know how to answer-repetition, etc. It was the first time I didn't have my nerve steeled against experiencing the emotion myself. I worked really hard to curb it so she could feel safe & confident in me. Then I got up, "drink of water" excuse, went into my office and had m'self a lil freakout, edging between numb and as few tears as I could allow myself.

I started some caregiver groups recently, hearing people with LOs much farther along… this is all starting to land, the reality of it, how unprepared I am, how much, how hard I'm banking on treatment and staving the inevitable off for a decade or three. As prepared as I seem to be with all the functional admin/caregivery stuff, I am so not prepared for the inevitable—never mind what the h*ll I'll do "after."

So, the question for those who've made the shift into the emotional acceptance:

What're the best practices to connect with the reality of this thing? How'd you do it? Is it okay to do this now, or best to wait until we're fully in the inevitable? How stoic were you, were you able to be, how'd you manage it?

Thanks in advance, my people.

ronda b · August 1

I wish I could give you an answer. All I can say is day by day. M so sorry.

dcare45 · August 1

From reading your post to me it sounds like you are doing a great job so far. I'm certainly not an expert and there is no one solution to deal with this. All I can do is tell you what I had done, right or wrong.

I have gotten a little teary twice in six years Once right after diagnosis and once a couple weeks ago. Like you never in front of DW. Tried to be as stoic as possible while still showing love and care always no matter how emotional I felt. All the emotions were there anger, grief, sadness, on and on. I felt them but did not fully acknowledge them. Just accepted what was. In over six years of this I have not had a shift into emotional acceptance. I still get emotional whiplash at times. We get through all the things we have to get through day to day dealing with this. Then I will look over at my DW and BAM, all the emotions again.

You are doing better than I did by actually acknowledging your emotional load. I have only recently joined support groups that I should have joined years ago. They are an outlet of sorts for me now. You are doing a good thing preparing yourself now, you may already be in the inevitable. Emotions have not gone away nor will they. Learned to TRY to own them, accept them and move on. For all I know the sole reason I was put on this earth was to take care of my DW at this time. So, I am going to do the best that I can, right or wrong.

persevere · August 1

Try not to burn yourself out worrying about what’s to come. Sounds like you have a good handle on what the future holds. Take it one day at a time and enjoy life together to the fullest while you still can. Take pictures and videos now so you’ll have them to look back on. You will know when it’s time to get help, bring hospice in, etc. This is going to be the hardest thing you’ll ever do in your life. Let her know you’re going to take care of her and to stop worrying so she can sleep.

tonyac2 · August 1

I totally agree with @persevere — this will be the hardest thing you’ll ever do. I wish I would have made more videos of my DH singing and playing instruments. It was devastating when the day arrived he couldn’t do either. So yes, take pictures and videos. They’ll become a treasure one day.

Maru · August 2

The first year after the diagnosis was the worst emotional time for me. Things evened out after the family and I came up with solutions to problems that will arise and that they all want to help. I have become so accustomed to remembering that he is handicapped (mentally) that I am patient with what DH does and says. We have shed a few tears together but if I weep, I do so privately. My concern is that I will become emotionally shut down, because I have done that before and that is a terrible place to be. While I do go to a Alz support group, I have found this online group the most supportive thing/place.

So, as you are asking for advice…experience the whole width and breadth of your emotions. Modulate them in front of your LO. If you shut them off, you stand the risk of becoming numb. It is my opinion that while many people can perform caretaking duties, being a really good caretaker takes some level of love and compassion. Wishing you the very best.

EarlInCA · August 2

I don't think acceptance is possible while watching a LO's brain shut down at an excruciatingly slow pace.

DW is 3-1/2 years into this terrible disease which has progressed to early Stage 5 and I am already emotionally exhausted and short of sleep. She was an awesome painter but won't touch the easel. She was a voracious reader but can't follow a story line beyond a few pages. We had wonderful conversations but no more. She just sits in her chair and impatiently waits for a meal or an event (something we do together). I don't know which is worse, the repetition of questions, the threats/kicks/punches, or the loss of companionship. I think it's the companionship of my closest friend.

There is no hope left: we've done all the treatments I've been able to find including 3 years of intensive hyperbaric oxygen therapy and 18 donanemab infusions. There are no new treatments on our horizon. For all the billions spent on research, they can't even identify the cause of AD much less prevent it or cure it.

I am taking it one day at a time and preparing myself for a battle over bringing in a part-time care giver or taking her to adult day care for a day or two each week. I need some space but I really don't know what to do with it because we have been an exceptionally tight knit couple for 40+ years.

Timmyd · August 6

The troubles of tomorrow will be hard, but you can deal with them. Don't make tomorrow's troubles worse by ruminating over them today. If today is horrible then just power through it "when going through hell, keep going". If today is not horrible, identify what is of value and lean into it. Slow things down and appreciate the miracle of our existence.

We are stage 6 and life is still worth living. Four years ago, imagining stage 6 caused me a panic attack. Today living in stage 6 is not ideal, but there are still many things in life I look forward to.

Something I ran across: "Lean in on life! Learn to be very present. Silence the voice in your head and be here now. None of us are getting out of here alive."

AlekoW · August 6

Thanks, everyone. All your comments are very helpful to me and I'm grateful for that. I'm keeping track of things I learn so when I get all verklempt in the moment.
Probably TMI: I've also realized from all this I haven't connected my heart & head from our DS' two years from hell trying to end his life—I was the manager fighting insurance & making arrangements every single day for two years, the one who pulled him back every attempt—crisis management mode. This is almost, though not quite, the same… I've got some work to do on "me" now. Gonna go grab a therapist and work through stuff so I'm fully present, head & heart here with DW.

storycrafter · August 9

Ditto here, to everything said above. Your acknowledgement and willingness to look at the impact of this diagnosis is the wisest and best start you can make. You're already doing what you need to do, and you're in the best place. This site was my life saver in the beginning years ago, and is now, again, after taking a hiatus.

I would add… you can't take it in all at once. It's too huge. Be patient with yourself and others. Take it one day at a time, one moment at a time.

It sounds like you will educate yourself over time and learn much that's very useful. When you allow yourself to stay open to learning and growing you'll equip yourself with the tools of resilience and stamina that are needed for this journey. That also includes allowing yourself to feel the pain of it and learning how to grieve/mourn well. I hope you'll allow yourself the tears as often as needed, at least in private; they release a lot of stress toxins. Here's wishing you and your wife all the support you need.

Quilting brings calm · August 11

please don’t promise her that she can remain home forever. Instead promise her that she will always be taken care of and you will make sure of that. Because you cannot predict her future care needs, your own health, and your ability to care for her 24/7.

Bgirl4ever · August 11

my husband was just diagnosed today. He doesn’t want the rest of the family to be told. I know I will need their support through our journey, we have 2 adult children who have the right to know, who will want to spend more time with their dad. I don’t want to go against his wishes. What should I do? How long should I wait to share his diagnosis?

any input is very welcome. I know I will need a support group. We are only 61 and 62 years of age, and he is in the early stage.

Timmyd · August 11

https://alzconnected.org/discussion/comment/279599#Comment_279599

Your husband's wish is not an effective long term strategy, but I would respect it for as long as you believe it is a sincere reflection of his current intention. People with a dementia diagnosis should be allowed to maintain agency until such time that the disease has clearly robbed them of that. If your adult children regularly spend time around him, they will figure it out for themselves soon enough. If they are not spending much time around him, then maybe find ways to encourage more contact that do not involve revealing the medical condition he currently wishes to remain private.

WIGO23 · August 11

My DH is at year four since diagnosis and still has ADL’s capabilities but memory is less than a minute most of the time; has anosognosia; has some personality changes of heightened irritability; sundowns with pacing and checking behaviors. How do I accept it? I really don’t have a clue. I cope with it. I don’t accept it. It makes me mad as he$# this happened to this kind and loving man, my partner of 54 years. I am equally mad it happened to me. I likely will never accept it but just continue to cope with it as best I can.

It’s like a death to me but worse because Alzheimers is not inevitable. It doesn’t happen to everyone. But like a death, you wish it didn’t happen, you remember how things used to be, you have a hole in your heart that cannot be filled but you cope and move forward.

Michele P · August 11

https://alzconnected.org/discussion/comment/279599#Comment_279599

Welcome. I am so sorry that you and your husband are dealing with this diagnosis. Right now, you don’t want to go against your husband’s wishes regarding telling others. I would encourage your children to come and visit and plan trip to see them or take vacations together while he can still travel. As others have said, when they spend more time with him, your children will see the problem. Having said that, your children have the right to know. They have the right to spend as much time as possible with their father. YOU need the help and support of your family. What if you are no longer able to care for him? What if you need surgery and need family to help with his care temporarily? If possible, ask your husband why he doesn’t want your children to know. We weren’t told you years that my mil had Alzheimer’s. This severely impacted my fil’s health. Once we knew, we were able to help my fil. We were able to plan for the future. My fil died before his wife. We had to take over her care. Make sure to consult an Elder Law attorney asap to get your legal documents in order.

storycrafter · August 12

https://alzconnected.org/discussion/comment/279599#Comment_279599

Bgirl, I see you're new to the site. Welcome! A lot of helpful info and support here. (You've written a reply on AlekoW's post and may not get many replies here on someone else's thread.) I want to respond to what you've written and hope you start your own original post to receive helpful replies specific to your situation. ~Helen

Settling into the emotional reality of YOA

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