My husband is 88 and in late stages of FTD. We've already weathered the worst stages of paranoia, delusions, aggression, etc. He no longer has the strength or freedom of movement or easy speech to catch us off guard with his aggression and agitation like a couple of years ago. This current stage is a different stage of heartbreaking. He's no longer independently mobile and needs help with bathing, dressing, transferring, etc. He's often very quiet, very sad and withdrawn when he knows I am leaving... for work, a day to visit family, household errands to run. And joining me is uninteresting to him (the family, the errands). He wants me with him all the time; and I thoroughly understand that. That part in many ways is so sweet.
Yet in order to care for him in our home, I need to work. We have 24/7 care and our primary caregiver has been with us for 4 years now. My husband was a very healthy, active man so we continue with exercise/PT therapy classes 3x weekly, massages to keep his legs pliant and limber, and any outings he might be interested in. I adjusted my work schedule so I stay home until 10AM to share the start of the day with him - and I'm home every work day by 6:30 PM. But every-single-day when I am ready to leave he becomes sad and withdrawn that I am leaving. Every day, whether going to work, running household errands, visiting family, "I" feel guilty that I am leaving .... again. I want to take care of him, I want to be with him ....and....I feel so guilty when I want to do something fun (or even pleasant) for myself. Some days I feel what I'd call, half-alive. Two years ago (during the height of the aggression, delusional, paranoid stage) I ended up in the hospital for two days diagnosed with "stress at home".
Now I'd like to fly to the East coast to spend a 3-day weekend with our daughter, for "a dose of Christmas joy" .... and I feel overwhelmed with worry. Or go to a family Christmas party. How do I balance providing a loving, nurturing environment for my husband and still make some life (at 68) for me? Is the way I'm feeling selfish?? Or since there is no crystal ball - is it more important to be at home "just in case"? People think I manage all of this so well ... they have no idea how lonely a full house can be. Has anyone else experienced this mixture of emotions??
P.S. We are so lucky to be able to stay together at home - there is much to be grateful for.