How do I continue loving my husband who constantly says he is fine and strong as ever when he clearly is not?
He has dementia and more. My husband is 80 years old, (I am 69) has moderately severe heart failure, hearing loss, dementia and is 20 lbs too thin. We have had a very close partnership marriage for 43 years and he constantly says how much he loves me, how wonderful I am and how wonderful our marriage is, etc. That is certainly preferable to him feeling the opposite, but it presents its own challenges because he is not the same man I married now.
He was an excellent and inspiring pastor and major leader in our denomination and built our last church to an attendance of 1600 each week. He authored two books and organized training conferences and did a lot of consulting in his retirement before this disease. Four years ago he battled throat cancer, endured radiation and chemo, had a stomach feeding tube for months and had to learn how to eat all over again after the treatments ended. We feel that the cancer treatments either created or accelerated this horrid disease and his other health issues.
But at this point, his personality has regressed to where I often feel he is an adolescent, or an adoring younger child, but certainly not the husband I know. I have to manage everything of course, our large house maintenance and repairs, shopping for groceries, all the bills and financial issues, taxes, doctor appointments and medications, social engagements (if we have any) and the relationships with our six children and five grandchildren. I love the man he "used to be" and I know clearly that it is the disease that is changing him, but in order to manage all this and maintain my own health, I have learned to separate myself emotionally from him and just not think about all that is being lost to this disease. He trusts me implicitly and looks to me as the "brilliant woman I married" who can do anything and manage anything.
But because he refuses to recognize that there is anything wrong with him, it concerns me that when the time comes to bring in help, or move him to an assisted living situation, he will see it as betrayal on my part. I can't bear the thought of breaking the deep trust we have had in each other all these years. Right now the only people I can leave him with are our children, and some of them are better than others at handling him. I feel like I am living a double life all the time--my marriage is over, but I have to pretend that it is still the same as ever. He is not capable of doing all the things he used to do and being all the things he has been, but he thinks he can, so I have to do a delicate dance constantly between true reality and HIS reality. I cared for my mother with vascular dementia for over 12 years, so I know this is just part of it, but though it was emotional to have to separate myself from Mom, I could return to my own home and busy family. Now I can't do that, and the relationship to the dementia person is vastly different, and deeply personal. My husband was truly my other half and I don't know how to manage pulling away from him emotionally as we go forward. I ask this for myself, but mostly for how to handle his confused emotions as I have to be less and less the wife he thinks I am.
When the time comes when the house becomes too overwhelming, tell him that YOU need to downsize because the house is exhausting you. Then find a nice Independent Living facility that also has Assisted Living/Memory Care... you can start out in IL for awhile in a nice large apartment.... then slowly order optional care levels for him. Once his dementia progresses, then he can move into Memory Care. It depends if you have the funds to do this.
Where my Dad had lived, there were married couples where one lived in IL and the spouse was in Memory Care. They could still enjoy the activities such as music and even have their meals together.
When you cared for your mom you could get away, go back to your own family, and that was a break for you. But caring for your husband, there is no break since you live together.
A woman I know was in a similar situation and she cleared out her guest bedroom and moved in there. That was her space. Her ailing husband stayed in the master bedroom but she found she couldn't sleep with him anymore. That might be an option for you if you have a guest bedroom.
Does your husband need supervision? Start cultivating a support group of people who can come and be with your husband while you get out of the house. Maybe attend one of your social engagements without your husband. Take advantage of those few hours where you're not Super Wife.
I wish I could rattle off a title but I think that there must be some books out there written by women who have gone through what you are going through. Try Googling "wife", "husband with dementia" "book", etc. See what you come up with.
And I think pulling away emotionally happens naturally. It's not something we set out to do. "Today, I am going to pull away emotionally from my husband." Day after day, week after week, I think it just happens. This doesn't mean that you won't love your husband, or that the kindness you show him will disappear. Pulling away is how we protect ourselves whether it's healthy or not.
I would bet that you're doing the very best you can do with what you have and I think your husband is lucky to have you. Just make sure you don't lose yourself.