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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 He's often very quiet, very sad and withdrawn when he knows I am leaving...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 But every-single-day when I am ready to leave he becomes sad and withdrawn that I am leaving.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.

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Dear DFD3935...You have nothing to feel guilty about. You and your caregivers are giving your husband the best life possible under the circumstances. You must have joy breaks and friends and family breaks. I take care of my 96 year old husband with afternoon help and am 65. I am finally meeting friends on my own for short and happy visits and taking exercise and quiet time breaks that I need to remain healthy and happy and able to care for the ups and downs and repetitions and outbursts of his dementia. We are blessed to have each other and I must manage his stress and mine to continue and have a life away as well as with him. So no more guilt just love and care for both of you. You are a beautiful compassionate, generous and strong woman and your husband is very lucky. Just do what you feel is best. If a three day weekend is what you need then go or ask your daughter to come to you and spend time with her doing fun things and then come home to your husband at night. Definitely go to holiday parties and schedule personal time on a regular basis. Your husband will always love and miss you when you are gone and you will feel the same but life demands are part of the routine of living and he is never left alone. Much kindness and strength to you both and Happy Holidays.
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Reply to Lala17
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What would you do with a 2 or 3 year old? If he is aware, tell him at the absolutely last minute, Kiss and goodbye, walk out the door. Don't linger and try to reason with him, his brain is broken.

If you don't take care of yourself, you can't take care of him. That means mentally as well as physically.

I don't know about the "Just in Case". You have 24/7 care so he wouldn't die alone. You being there won't stop it from happening. If it would ease your mind, have his doctor or Hospice, or some medical person tell you if he is likely to die in the next week or so.

Go, as the poem said;
"Oh, cleaning and scrubbing will wait till tomorrow,
But children grow up, as I’ve learned to my sorrow.
So quiet down, cobwebs. Dust, go to sleep.
I’m rocking my baby. Babies don’t keep".

And neither do daughters and sons. I lost my beloved niece a few days after she turned 53. I have lost co-workers way too young. 5 of them died at one time, they were from 40 to 23. Life is uncertain, take advantage of a relaxing holiday, it is good for the soul.
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Reply to MaryKathleen
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could you make video on an iPad and have the caregiver show it to him when he’s down?
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Reply to Franklin2011
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You are taking care of him by setting up all his care. If money is the reason you go out to work, it may be time to cut back the PT and the massages. I'm guessing that leaving the house is something you do for yourself and that's not a bad thing.

Try leaving the house quietly without such a fuss.
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Reply to Bigsister7
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Just tell him you need to go out for awhile. Your caregiver needs the details, of course, but hubby doesn't need long good byes.
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Reply to Taarna
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Just in case of what? If you were with him he would still die, this cannot be stopped.

I would not give up my entire life for another, I do have a right to live and I intend to do it on my own terms. My husband had cancer for 12 long years, I worked, I socialized I took the best care of him that I could within reason, as I also needed to care for myself...if I didn't I would be useless to him.

Go, enjoy your time with your daughter...you've earned this vacation. Don't let guilt keep you in a prison with invisible bars. Just tell him, don't ask, go for it!
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Reply to DollyMe
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Is he a Veteran?   I believe they have "friendly visitors" who could come to your house.

What about Meals on Wheels?   They can provide company as well.

Could he participate in senior social activities if the local Senior Center has a paratransit bus to pick him up?   Any neighbors who could drop by for a visit?

I feel badly for you; I can sense the pain in your post, and that you're torn between working and caring for him.  It's an unfortunate dilemma to face.
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Reply to GardenArtist
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DFD3935 Dec 9, 2019
Thank you so much for taking the time to reply.

Yes, he is a veteran and I had not heard of "friendly visitors" - I will check into that. The difficulty with visitors is the advanced stage of FTD has virtually removed any ability to participate in conversations. He is unable to put sentences together; nor does he have mobility to participate in activities at the center.

We do reach out regularly to old friends who know the circumstance. I find though, that most stop by after I'm home so I can do the interpreting. He likes seeing people there but doesn't know the social cues anymore that help him interact with them.

My brother is very active at a local VA - I'll definitely check out friendly visitors program. Even arranging someone to come by when I am home might give him new and interesting interactions.

Again, thank you so much for the very good ideas. I hope you enjoy a warm and friendly Christmas season.
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No, you do not need to be home just in case...

You know that your husband will die, most likely before you do, but you cannot put your life on hold waiting for the moment to come.

You are not selfish to want to enjoy your life.
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Reply to Tothill
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DFD3935 Dec 9, 2019
I appreciate your reply.

I guess it's a part of the "journey" we're on ... such an incredibly sad time. In so many ways. And there are many, many people out there going through similar challenges. In general I don't need much and don't need consoling; but there are days ..........

Thank you again :0)
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