Feeling guilty

Elaine2

My DH husband and I have always been open with each other and he has been tested, but has not been officially diagnosed yet with dementia but all the signs are there. I feel guilty talking to our children about him behind his back, but I feel like they need to know what’s going on. They have seen some of the signs as well, but the intensity that I see is not something they’ve seen. I try to share some of that intensity so they understand. Am I doing the right thing? I feel like I’m deceiving him.

M1

Hi Elaine and welcome to the forum. I don't think you are deceiving him, but you are experiencing the inevitable change in your relationship that this illness brings. He is no longer capable of being your reciprocal partner, and you are faced with being his caregiver for an illness whose implications he can't really appreciate. It's heartbreaking, and it changes all of us when we lose our spouses to this disease.

educate yourself about anosognosia; most people with dementia have it, and they are unable to perceive their deficits, this is quite different from denial. I am glad you are telling your children, you will need their support. You also need to move quickly in these early days to be sure that you hold durable power of attorney for him for healthcare and finances, with one of your children named as backup and as poa and executor for you, as your husband should not be named in that capacity for you. Getting legal and financial matters squared away while he can still sign is critical.

michiganpat

Elaine2, I used to struggle with that too. My husband has had dementia for at least 7 years. I said nothing to anyone for 3 years (I was in denial at the time and blamed depression) and then finally told our kids. Our daughter had noticed her Dad repeating stories a lot but that was all. They weren't seeing what I did. I felt so guilty talking about him behind his back for a long time, but no more. He has slowly progressed and if you talk to him for any length of time you can see it. He still show times pretty good. They are thankful for the updates and are so supportive. I couldn't do it without them. I need their advice and know if I had continued to be silent they would have been very hurt and I would not have had their support over these last years. He is their Dad and they have a right to know and be involved. I need them to help me get through this. You are doing the right thing allowing them to be part of this journey.

annie51

Elaine, I can understand your feeling of deception, but as others have said, this disease makes you do things you would never have done in the past. I believe it’s best to tell them - if it was my father, I would appreciate the knowledge.

SDianeL

You are definitely doing the right thing. They need to know & understand. I would suggest reading the book and giving a copy to them to read - "The 36 Hour Day" which was recommended by a nurse when my husband was diagnosed. Fibbing will become your friend. I never told my husband he had dementia and thankfully the doctor didn't either. She referred to it as white matter disease and cognitive issues. When I made appointments for him I didn't tell him what doctor it was, I just said his primary care doc wanted him to see this or that doctor. If they prescribed a medication for him & he asked what it was for, I would say "to help your brain remember" and he would accept the new medication. As M1 said above, make an appointment immediately with an Elder Care attorney and get a DPOA & Medical papers in order. Within 6 months my husband could no longer read & understand legal documents or sign his name. This is the place for info & support. Learn all you can about the disease.

Elaine2

Thank you! I thought all of our affairs were in order but I hadn’t thought of him not being able to be mine even though he still could be living.