Feeling cheated

@jeanadair123
Hi, hope this helps you get back in.
Judi

I’m back after inadvertently blocking Connect Mayo.
Wednesday is going to be a big day we see the neurologist for the results of the MRI. Since my husband and I have never addressed his changes, forgetfulness etc I am wondering how everyone’s partner/spouse has reacted to what the doctor has said regarding any results? I am concerned that he will get upset when he is told the results? He is very happy and I don’t want to change that for him? It’s the same with his cancer I have not told him as he seems to be adjusting well to the medication. Let me know please?

@jeanadair123
Hello: My husband does not have many big emotions anymore. When he heard his diagnosis he just said, "Oh" and said no more. His brother died last summer and he would not even accept a hug and didn't even cry. It's like he's had a lobotomy.
My husband also has what is known as anosognosia, meaning no self-awareness. He doesn't even realize he has dementia. This made for difficulties when it came time to surrender his driver's license and debit/credit cards.
That's our situation.
All the best to you. 🌻

Dementia is such a loaded term for me that I had avoided using it to talk to my husband about his condition and had warned others that we used the term "memory problems." A couple of months ago, however, his primary care physician came right out and asked him how his dementia was doing. DH looked confused and said he didn't know what that meant. Ha. Very recently he has undergone extensive testing including an explanation of his MRI and didn't seem too phased. But then, maybe he doesn't really understand what is going on.

@lkbous Nope. I'm still grouchy and overly frustrated.

@judimahoney Thank you.
We will see what the dr says tomorrow? I know he is aware of his forgetfulness but he gets angry if I disagree with him then he doesn’t remember. Tonight when he had his dessert he said he did not have a spoon when I said it was in his bowl he got mad he said it wasn’t, he just didn’t see it. Not sure how to deal with that.

Dear @bellaskye25

Sometimes the extraordinary nature of this disease makes us feel that full surrender, suffering, self-denial, etc. are inevitable. Based on my experience and on talking to people about their experiences I believe that there is often more latitude than we realize. When I talk with people whose partners have newly started to show symptoms or have just been diagnosed, if they have some means or friends/relatives who can help, I tell them that they need to decide how much they want it to change their own life and start planning accordingly. If the person does not have means or close individuals, then I suggest they commit to building their own emotional and physical health.

What worked for me
- As I have shared on another post string, once the situation presented itself I decided that I would take on the job of Chief Happiness Officer (CHO)for us. That got me in a good frame of mind.

- I joined a support group
-- That gave me an excellent view into the future -- we are always steps behind where the disease is going, and hearing about what might be ahead was excellent calibration that I would not have had regarding the burdens to come.
-- That group also drummed into my head "Get help before you need it." This is key. Not only did people recommend that, I heard the tough experiences of the people who failed to do so.
-- The group was also the direct source of a couple of the wonderful caregivers who helped us through important transitions. They also introduced me and my husband to a terrific, 4 hour per day, day care program that he attended for a couple of years.

- Finding and mining the intersection between what I enjoy and what was good for my husband. We have all heard how important "engagement' is for our Persons. I have certainly lived that. In my CHO role, I filled his time with exercise, social events and cultural events. Your list may be quite different. In our case, this kept him very engaged (which I believe contributed to his very slow decline) and had me engaged in things that I enjoyed as well. The exercise element supported both my emotional and physical health.

- I took the caregiving up to the level of a mission and I load every moment I can with love. We have always been very close, but focusing on preventing him from suffering in the course of this disease through making him feel overwhelmingly loved has filled my life with great joy too.

What did not work, then did:
- When his needs grew I was trying to manage with bits and pieces of help. Interestingly, the schedule was so chopped up that I had to personally micro-manage a lot of details each day and the caregiver/day care schedule often did not allow me the time to actually do the things I needed to do. Unexpectedly, I suffered a major life threatening medical issue. It was that forced absence ( I had to place my husband in memory care for the period of surgery and recovery) that allowed me to see that the care plan that I had been trying to put in place for him was unsustainable. In my case, I also did not like having us living apart so I chose more comprehensive home caregivers. I now can come and go as needed, comfortable that someone caring and knowledgable is there keeping my husband safe and happy. I have even added a few regular activities that are stimulating.

I am relatively new to this site but see that part of the beauty of it is that we can share our experiences and, when it is requested, give advice based on that and not worry too much that it might be taken badly, because everyone knows that it is given with caring intent. It is in that spirit that I dare recommend that you stretch your protection of your privacy in the interest of protecting your role as wife and "best life" partner to your husband:

The caregiving duties can really starve those other all-important roles.

Allowing help into your life has other benefits:
1. As I have noted, it can allow you to have personal enrichment activities, whichever are really nourishing to your spirit : Time in Nature, volunteering, reading, an art class, etc.
2. It also adds to your husband's social life, which adds to his well-being. Listening to my husband's interactions with our caregivers is a delight for me. They laugh and "talk" and share entertainment, and he is truly happy. At this stage he cannot finish too many sentences but enjoys being in the midst of conversations, which he does still understand. So having the caregivers for me to converse with in his presence also provides mental stimulation and entertainment for him-- and it is easier to do than having rather one-sided talks with him all the time.

I am sure that you will find a way to a peaceful balance between your strong commitment to your husband and your very reasonable desire to have a life that includes more than caregiving. Your post makes it clear that you recognize the issue and that you are ready make some changes to move past this corrosive combination of guilt resentment and duty. It sounds like he can still be left alone for some periods: If you start experimenting now, when that changes, you can be ready. All the best to you.

@jeanadair123 Hi. Your post reminded me of what my wife often did in her journey.

It helped me immensely to remember, as her neurologists told us, "Your wife's brain is broken. Do not expect her to be able to think logically". So, in cases like your spoon, I would just say 'OK' and get her a spoon. Disagreeing, pointing out that she was 'wrong', etc., made her reactions worse. Her anxiety was always worse than me having to wash an extra utensil, blouse, etc.

Strength, Courage, & Peace

@jeanadair123
I learned in a dementia class I attended that vision can be affected. The colors of things in front of them can be challenging to see if they are not high contrast. Also peripheral vision can be affected so best to approach a person from the front.