Learning to live with the sadness




That's what I was thinking about driving home from MC today. DH has been in MC for 15 months and I am still so very lonely at times that I start crying. I thought he was adjusting well after a rough time last summer. The last two times I have visited however he has asked to come home. It broke my heart when he said, " I just want to go home." Today he was putting things up and asking what he should take with him. He thought we were going home. When I make an excuse to leave, he asks if he is going too. When I say no, he says okay if you think that's best but there is sadness in his voice and eyes. I tell him he is in a rehab facility to get stronger because he has been sick. I tell him I have to go pick up my sister or go get a prescription or some other fiblet to try and leave without upsetting him. I would bring him home in a heartbeat if I thought I could take care of him but I can't. So I live with the sadness. Even when out with friends to have lunch, underneath my smile is the sadness.
Comments
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DW has been in MC for just over two weeks, and I've only visited her 3 times so far. She also asks about going home, and she collects things toward that end. I put a bunch of photos around her room, but she has taken most of them down and stored them so she can take them home. I feel sad when I slip away, but I suspect within minutes she will forget I've been there.
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My DW has been in MC since January and I try to visit every other day as it is only 11 miles away - I do my best to keep her in what she needs but the disease is doing what it does - She to would like to come home, etc. - I've said it like others have and all we can do is our best - My best is better some days and worse on others.
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to him, home is a feeling not necessarily a place. Many who are still at home ask to go home every day. Just tell him he can go home when the doctor says so and immediately change the subject or get him a treat. Ice cream worked for my DH. Be prepared to answer the question every time you visit. When you leave after visiting don’t say goodbye. Just quietly slip out and let the nurse know you’re leaving so they can distract him. I visited at mealtime so my DH was distracted by his meal.
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When my DH was in MC and he talked about going home, I asked him to tell me about home, he would and it would be a childhood home. Sometimes I would take him to a drive through coffee stand, close to our home, he had no idea where we were at. He knew me, but the home he remembered was not our home. 😒
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(((White Crane))) I know that sadness. I'm sorry.
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One of my greatest fears of this journey is the thought of having to place my DH in MC and dealing with the inevitable guilt. I simply don’t know if I could leave him if he asked to go home. Those of you with that strength are to be admired because you know you are doing your best. I never feel I have done my best.
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We sleep well at night. Every morning my DW wakes up with a smile and says things that make me feel like I am the greatest person on earth. Then we start our day and within a few hours, I she has called me awful words for just having to answer a phone call or use the toilet. Then there is the endless chattering combined with the shadowing that grinds away at me all day. But there are these breaks in the chaos where she says the kindest things and makes me feel so incredibly loved. I have a failure of imagination. I cannot image placing her in MC and I cannot imagine enduring the current situation. I am left with just the hope that some change in medication or disease progression makes it more tolerable.
Then add the cost of decent memory care and the understanding of how many years that could go on.😐️
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Many here are right about being home and wanting to go home. My DH is home with me and daily cries about wanting to go home. I never know what the day will bring, but I can almost count on him wanting to go home everyday.
3
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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