My husband is in a facility where he can not come home. He has been there for only one short month. I visit him twice a week. Travel time each way is 2 hrs. There are no goodbye kisses. He needs to be distracted when I leave.

I have to then quickly disappear. I still do things for him. Shopping for clothes and shoes that never fit. Most clothes he has are too large. I also do some laundry. A few pieces at a time. Most people say, wow you have your life back now that he is out of the house. This is easier said than done. It is raw emotions, none the less. Not every visit is pleasant. FTD is not easy to deal with.

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You are correct in that FTD is not easy to deal with. My Luz had it for just under three years. Along with it she had aphasia. I too had a difficult time leaving her at the rehab just for the night. We lived much closer than you do, so I was there nearly every day from about 7:00 am to 8:00 or 9:00 at night.

Many times I cried on the way home after a difficult time escaping.

She was at home most of the time during her ordeal. And the changes just tore me up. The things she tried to do and the things wanted to do. The things that did not work as they once did.

Finally having to leave her for the night with hospice until the end.

Your crying is normal and healthy. Personally I would worry about you if you did not cry given your case. I still cry over some of the memories of those days.

And no you do not have your life back. You may have freedoms but not your life. You are still busy taking care of him even though you are apart. You will use the terms we and us for a long time, and that is good too.

I wish you the very best on your road ahead. And come back often give us some updates. Please
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inntruth Nov 2019
FTD is awful!! We are dealing with it too. I am so sorry for anyone dealing with this. The symptoms are so cruel. Love to all.
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"Tears are God's gift to us. Our holy water.....they heal us as they flow." Rita Schiano

I am so sorry for the pain and loss you are suffering, my friend. I work as a receptionist in a Memory Care community and know quite a few spouses in your situation. One gentleman broke down last night, telling me how hard it's been for him to be alone after having to place his beloved wife 3 months ago. He sleeps with a 5x7 photo of her next to him on her pillow in their bed every night. His story moved me to tears.

This dreadful disease has torn so many couples apart; it's ignorant for anyone to tell you you've gotten your life back now that your husband's been placed. Both of you lost your lives when this disease struck and that's the honest truth.

Sending you a big hug and a prayer for you to find some peace throughout this difficult transition
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Riverdale Nov 2019
What a lovely saying. After what you have earlier described about your mother I am impressed with the job you have. I don't think I could be that brave but since life is testing me with ailments it will never be an issue. When I first learned my jaw was fractured over a month ago I had many tearful days. Now I am just sadly resigned to it and all it has altered.

Bernese, although the relationship was different I was very close to a grandmother who spent her last years in a NH. I had to travel a bit to get to it. It was always so hard to say goodbye. She would wave to me from her window as I was leaving. I probably spent most of my ride home in tears. It was not a good place for her but she had been placed there by my aunt and uncle who had taken care of her in their home for years and just couldn't continue. I don't think they had alot of choices. She was a wonderful woman who had taken care of both grandchildren and great grandchildren in her earlier years. I owe my domesticity to her as my mother was lacking in that area. Anyway I believe crying is cathartic even if stirs up painful feelings.
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I’m sorry Bernese. Very sad situation for sure. Where it’s only been one month maybe your husband will adjust and visits will get better. This must be so hard for you. I care for my Mom and it’s difficult to watch the changes and wonder how to manage as the disease progresses. I can only imagine how difficult when this is your spouse. Well meaning people say you have your life back however this is still your life and it is heart breaking. It will take time for your adjustment to this change as well. Sending you a hug.
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There are times when crying can be cathartic. If you are doing it in your car after a visit it may be an emotion you need to release. Eventually you may find it might subside some. I would allow yourself that and just continue to do the best you can with providing the needs he has. I am sure many here on this forum have had such times. I know I have. I recently had to have a fairly complicated surgery basically from a mistake. It has affected me in many ways. For a few weeks I cried alot but now I am just dealing with it. I hope your times improve.
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My husband has been in permanent care for just over 3 weeks , also with FTD. His place is brand new (in Australia) and is based on group homes within a village like set up. My husband is 64. I visit twice a week and it is a 2 hr round trip.
However it is nothing for him to call me 6-8 times a day which is very distressing and annoying causing me a lot of anxiety . when I go I take him out for some lunch and a walk. We are luck to have a couple of beaches nearby with boardwalks
It helps that he goes to men’s club for two hours on. Tuesday where he meets men from other cottages and if he wanted to an attendant would take him to visit. One of the staff takes him for a decent walk get a coffee every day ( something he has been utterly obsessed with for the last few years). Soon he will have a person come to visit and take him out for two hours twice a week. Can you talk with staff and manager about things and distractions for your husband to do. It takes time to realise you can slow down and breath
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I know how this feels completely. My dad has been in and out of psych ward twice and I just moved him to a new facility on Wednesday. He was discharged from previous facility due to aggression. My life has not moved forward at all since he left my home. It has been constantly something just like you said. I feel like my life will never be normal again. When I go to see my dad I get physically sick. I am gripped with anxiety, heart palpitations, and abdominal pain. I am trying to figure out how better to process all of this but it is so hard.

I also cannot let him see me leave. I can’t tell him goodbye or that I love him. I just have to have someone distract him while I make a run for it. My heart breaks even more every time I see him. I really did not think I could hurt any more than I already do over his condition but each day brings deeper heartache as he is not doing well.

I love the village idea they have adopted in Australia. That is such an awesome concept. I really hope you will be able to be at peace with things. But I know firsthand it is a long journey and wonder if it can ever really be achieved when dealing with loved one’s dementia. Sending positive vibes your way!!
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Hi Swise,
Thank you for answering. Your story is sad too. So similar. At least we are not alone. I wish you well. Hopefully your dad can adjust to his new place.
Sending some {{{hugs}}} your way because this is a hard transition. You have received a lot of good advice here.

For the folks who say you have your life back, try to be forgiving - obviously they have not walked this road, or they would understand that it is not that simple. There is grief and loss even while your dear husband is still here. Grief of the life you shared together and the future you thought you will live with him. I'm sure they don't mean to be insensitive, they honestly just don't know better.

I don't have a good response for you to give them, maybe just some truth, spoken with kindness, "Although Bob is in a facility, I'm certainly not foot loose and fancy free. I am in transition, a difficult one at that. Trying to figure out how to include visits there, with my life and responsibilities here. Honestly, in some ways this is harder than caring for him at home. I would appreciate your prayers for me as I navigate these uncharted and choppy waters"

Now, you know, that some of your friends who are saying these things, are just superficial friends anyway. Not those who will come sit on the couch and hold you as you cry. I would say, cultivate the relationships with friends who are going to be most supportive for you right now. Those are the ones that you need in you life. Listening, caring and offering their love, even when they have no real solutions or help for the situation. Just their love and listening will be helpful! Don't waste too much thought or energy on the superficial friends, they sure aren't spending much on you.

As to the crying, I think I would just keep some nice, vintage hankies in my purse, and when it comes, step aside or pull the car over, and let it happen. It is a physical response your body is having to this loss and all this upheaval. Trying to stifle it, won't be good long-term. You are going through so much, it is hard, and you can't always "keep a stiff upper lip" - sometimes you need to give into the emotion and feel it, scary and hard as that is. It will ease up as time goes, you won't cry forever, but you may be emotional for awhile.

Keep coming back here, you will get so much support and encouragement!!
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There isn’t anything I can say that will help in this devastating situation but I just want to say how sorry I am that you are going through this. Cry if you need to cry. It’s normal.

Sending you a giant hug. 💗
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EssieMarie Nov 2019
I cry excessively too in my role as solo caregiver for my 94 year old mother. But tears can also be very healing. The grieving process is never an easy one. God bless you.
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I don't know if this would help, but sometimes it's helped me, and that's to remember that regardless of the circumstances, I'm doing the best I can for him, including shouldering some of the tearful times.  So when I'd break down and start crying, I'd tell myself that I'm absorbing some of the emotional pain for my father.   Still, there are times when tears are appropriate, and as mentioned, they are cathartic.   

I've read somewhere over the last years that analysis of the contents of tears shows substances associated with catharsis, and stress relief.  

Does your husband have favorite music?   My father used to relax when he played his favorite CDs, or when I took him to the music room and played piano for him.   I was always surprised how many others would roll their wheelchairs in to listen, and I'm not even a very talented pianist!

Also, silk flowers in a vase in his room might bring a cheery aspect.
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Rafaela Nov 2019
I agree. I was very upset that I was no longer providing care for my husband at home the way I’d promised I would. My sweet brother pointed out that I’m still providing care while he’s at the AL, and he was right. I had no choice, so the guilt for it was not rational, but rationality is not not always in charge of our emotions. I needed to hear what he told me.
You are grieving a loss - the loss of having your life partner by your side. It hurts and it will take time to get used to the "new normal." Have you considered moving closer to him? If this is not possible, then consider how you can make the time together wonderful. Get your kisses early and often. Bring fun into his "new place" for both of you.

May I suggest attending a grief group to help with discussing your feelings with others experiencing loss.

Make new routines in your home that ease into your "new norm". Maybe you pick out clothes for your hubby to bring for the next week and place encouraging notes in the pockets. Maybe you start taking luxurious baths in the evening with scented candlelight, music, … Maybe you create a routine of reading before bed. Make your life enjoyable in your home.
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