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.
Be as kind to yourself as you can be. Think about what you might suggest to a friend who was in the same situation as you are. Be a friend to yourself in dealing with these emotions.
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!!
May I ask you why you can't stay the day? I understand 2 hours of traveling is awful but if you could spend more time with him, it might help your crying. I can't even imagine what you're going through. Everyone told me to put my DH into a NH but I said no, not as long as I can manage. It was a comfort to have him home with me. The last 6 months were definitely a challenge but I managed by setting priorities - dust bunnies will not kill, they only laughed at me.
Anyway, what I missed the most was being able to lay down with him - when he was in hospital, I climbed up on the bad with him and we both would fall asleep. Any "normalcy" is better than none.
I don't know what FTD is, but I am sorry for what you are going through. I am saying a prayer for you. BTW, I was advised to take Ashwahgandha for the stress and it really helped me. I refused to take Zoloft.
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.
was also our 50th Wedding anniversary. No happy Party. 5 days later
I brought a small cake with 5 candles.
Just recently I’ve turned the page and realized I’m coming up to five years of taking care of my mom - also with FTD and Primary Progressive Aphasia. For the past two months every time I said “five years” I’ve broke down and cried. It’s a big chunk of my life that I’ll never get back. She’s been in a memory care facility for awhile but the caregiving doesn’t end. I’m as sad for her as I am for me. FTD is a tough diagnosis and I sympathize with all you’re going through.
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
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.
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
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.
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. 💗
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!!
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.
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
.