I want to hide
I just don’t want to get out of bed and face the day! To face DH. Sounds awful and I feel terrible saying it out loud, but it’s the truth! So many things that brought me pleasure no longer do. The sweet sound of the birds in the morning, going for a walk looking for sea glass on the beach, sitting on the deck on a beautiful day. What once was enjoyable is so fleeting now knowing what I have to face. All I face now is a cranky man who doesn’t shower or shave, sleeps in the same clothes he’s worn for days, whose forgotten how to properly wipe himself after a BM, picks food out of his mouth and insists on being attached to my hip! I’m not blaming him, I know it’s the dementia. I’m finding it so hard to show compassion and understanding I want to hide,bury my head under the covers and wish this all away. How do you face each day, how do you stay positive and compassionate?
Comments
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I could have written your post. I think we both have depression. Lack of pleasure is huge red flag.
I've tried therapy, thinking about medication. Anxious to hear what others have to say.
Dementia sucks.
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Get some "me time." You need it desperately. Adult day care, "friend" that you hire (caregiver) coming to the house to give you a break, respite stay in an MC facility.
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I get out every day, for a few hours at a time. It does help, especially since the time is spent swimming or socializing. There are no adult day cares or MCs that offer respite care in my area. I will eventually hire caregivers to come in, but now he is so attached to me, I fear it wouldn't go well.
I know I sound terribly negative, I think that's the depression talking. It's a catch 22
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yep. Depression. But at least a justified depression. One you know the reasons for. My screen name tells you what I do to deal with it. Quilting and reading both lift my spirits.
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I too get out everyday, even if it’s for an hour, but the guilt is terrible. DH can stay home ok for now but he wants me around all the time. While I understand it, it is suffocating . There are no daycare places near me so I guess in time I will hire someone. Appreciate your comments.
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I don't know how a person could be a caregiver and not experience loss, grief, anxiety and depression. Self-care is very important. Like the oxygen mask on the plane, put yours on first and then help others put theirs on. I meditate and exercise. I have sought counseling and now I have been started on an antidepressant. We are all doing the best we can. Seek help. Be kind to yourself.
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I sure could have written your post! This horrible disease is so life-changing. Everything depresses me. Every little change. I hope you know that you are not alone and that you can come here, even if it’s just for an opportunity to vent. ❤️
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Yes! That sure sounds like depression and a trip to the doctor and some medication will make a huge difference. I have had depression and have taken medication for it in the past. I have to be very diligent to make sure it doesn't rear it's ugly head again as I perform as caregiver to my DH.
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In a different post, @SSHarkey mentioned to someone that they were going to feel grief with whatever decision they made. That’s so true for all caregivers. You said that you can get out, but feel guilty when doing so. What I would suggest is that you look at your “me time” as a bitter pill that has to be swallowed if, for no other reason(although there are many, your well-being actually being first), you want to be the best caregiver and advocate for your LO.
Remember the example that is mentioned here frequently: you have to put the oxygen mask on first before you can do so for your LO.
Take care of yourself. Please.
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Does the antidepressant help?
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I'm at the same place…I am anxious and uptight most of the time, but try so hard to find joy in the little things. Sometimes DH is so negative about everything and I try not to get caught up in it. I try to stay positive but that isn't always possible. But today, I convinced him to go to our favorite local nature preserve (although he only remembers it when he sees it) and when we pulled in he said "oh, we're going here AGAIN?". I said it's a beautiful day and I wanted to get outside - he ended up really enjoying it, especially when we saw lots of wildlife, alligators included. I just never know when his attitude will be good, so I hope for the best!
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I don't know yet. I have only been on it a week or two. I hope so.
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It does.
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I feel the exact same way. I think I have PTSD from all of this and have extreme anxiety getting up in the morning. I'm seeing a grief counselor, but, it's not all that helpful. I still have to deal with all of this. On top of all of this, I should be making plans to go and visit my grandkids, but, I won't be able to do that anymore. I'm so grief stricken at how this is all unfolding.
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You are not alone! I am trying to deal with the depression by making sure I get time on my own several days a week. I have caregivers coming in 3 days and I’m fortunate that my DH has not minded having them assist with bathing and dressing. I leave the house when the caregivers are here - work out at the gym, go for a walk, go to the library, meet a friend for coffee. Everybody says “take care of yourself”… it’s true, we have to take care of ourselves to be strong for our loved ones.
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I so feel your pain. I’m there with you. I used to love to get up early. No more. When I get up he is always right behind me. DH is my constant shadow. I can’t go anywhere without him. I have no help. He doesn’t believe he needs a “babysitter” and he wants to keep me safe. Ok. I feel imprisoned.
We need to find a way to get time to ourselves and to get away from it all. I’ve only found little things that help. I have started a low dose of antidepressant. It does take the edge off so that life seems a bit more manageable. I seek out any local event I can find that we can go to together. Our library and council on aging frequently has music events and interesting presentations. We also have memory cafes in our area. It helps us feel a bit more connected. It gives me opportunity to chat with others or to simply space out and be alone with my thoughts without having to help him with something every 5 minutes. I try to find time to read. I’ve always loved reading. It’s a perfect escape from real life. Sometimes I go hide in the bathroom. DH doesn’t like to walk but I always try. Sometimes it works out and that is good for both of us. I make a daily effort to count my blessings. I listen to the news everyday and that gives me plenty to work with. Things could be worse in so many ways. What we really need though is to find ways to get ourselves some respite.6 -
I so relate to not being able to be with grandkids- losing time with them has been one of the most painful losses of all. My kids are pushing me to look at LTC options so they don’t lose us both- but THINKING about placing my DH in MC makes me so said- and scared at the expense- so I feel like I’m in limbo- but an anxiety filled limbo where all the options are so sad and hard. That’s not very encouraging but I guess you all understand!
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I miss my grandkids too.
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Dear JC5, i am in the same boat. I can no longer go anywhere by myself and feel little pleasure in the days I used ti enjoy so much. My husband gets so anxious when I leave the room. I finally have 4 hrs a week.of respite care, a life saver. I highly recommend you find an agencyfor respite in home care. I sure wish I could have 3 days a week but 4 hrs is better than nothing. Go get a massage, a pedicure, go walk the park, got out to lunch with a friend, cry in your car or scream **** at the top of your lungs. Dementia SUCKS! So many talk about the person with dementia but the spouse also goes through hell. You will be here long after he's gone and I think a lot more support needs to be focused in the caregiver. We are here for you. Carve out a little time for yourself every day, even a few minutes at a time not to be drawn down into dementia land. I often find myself dreaming of a better future. I hope you find peace. It's hard
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You are the boss. My husband first hated the respite person and refused to come out of the bedroom. I did not budge. Eventually he made his peace with it. He cannot bully you, however inadvertently, into never leaving him. Would you give a toddler that power? ?
Ps. I adore my DH. We love each other to bits , but I accept reality and my limitations.6 -
Dear JCS, Hopefully, by now after reading all of these comments, you see that you are very normal. I feel the same. I get up early and when I hear my DH rise, my immediate response is "Oh crap, he is up already."
All of these wise and experienced people are showing you a path to improve your mental outlook - get out of the house, take care of yourself, no negotiations with your spouse - you are in charge, get counseling and consider antidepressants (which have helped me). Please do all of these as they are vital to your survival. I have had counseling, take antidepressants and accept help to get out and away. It really will help you to pull out of the funk you are in. It gives you a fresh perspective and doesn't make you feel as trapped. Please fight back this depression via all the strength you can muster. You deserve to be well, mentally and physically. Don't let this disease take both of you. It will try.
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AMEN!
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PWDs gradually lose the ability to think things through and to come to conclusions. They can no longer think, if this…then that… For example, if I go to the nature preserve, then I will have a good time. They lose their memories, so cannot remember the nature preserve or anything else, without seeing it. Eventually they will not remember even if seeing, so it will be counter-productive to remind him that he used to go there all the time. PWDs live in the moment. Don't rely on their past memories to do activities.
Shadowing is common, unfortunately I don't have any suggestions for shadowing.
Iris
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Dear @JC5 ooh…as you can see, you are in good company with just wanting to hide and wish this all away. If only. What stood out for me from your original post (OP) was the very last question: "how do you stay positive and compassionate?".
That is where my "Ooh!" response comes in. The answer is, I don't! Try as I might, I have not been able to remain consistently positive and compassionate in the 5+ years that we have been fighting this losing battle with dementia. I don't know anyone who could.
But I try to come back to that as a baseline mindset, and this attitude really helps. I have fallen off that wagon so many times, if I dwelt on the times I "failed", I would never forgive myself. What matters is we keep breathing, keep trying (whatever you decide to try today as a goal…could be respite, or together time even a few good moments makes me happy and apparently DH too…could be visiting MCs for potential long-term or respite placement, maybe it is scrolling through Pinterest, or binge-watching something Netflix — just give yourself permission to do something (or nothing!) every day — just because YOU feel like it.
I am going back to read everyone's comments now. I always find such good tips and also real connections and understanding here in this forum. It can really be a highlight of my day sometimes, whether sending hugs or receiving them.
*Editing to add some things I remember from early days on these boards: A few of the more experienced caregivers at that time had a strategy that really worked for them to compartmentalize and kind of detach from the depressing aspect of this. They had decided to look at it as if it were a professional role. Like a job, and were better able to deal with behaviors (and even just the exhausting solo workload) with less angst.
Another strategy was thinking of the daily cost savings for anyone caregiving at home. It was something like $200-$300 a day, and they looked at that as a positive value to what they were doing…saving versus depleting. It helps me when I don't feel that this is thankless, useless work with a no-win outcome. There is a value to whatever I'm able to do on a daily basis, even on days when I'm not feeling up to the task. That is, I am helping my DH through his end of life decline and also helping myself by not letting his disease take us both out. Facing each day is just what we do, and finding healthy ways to help us help them, is important. Good luck to you (and all of us).
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Positive and compassionate? Well, positive is difficult. I start out that way, but even though my husband is usually cooperative (medications help with that) just the sheer workload and monotony of dealing with meals, incontinence and watching that he doesn’t fall, takes its toll on my patience. I always feel compassion toward him even though he drives me crazy with sundowning these days. He’s still him underneath all the forgotten things and the often extreme difficulties with daily things. I want him to live as long as possible as long as he isn’t in physical pain. I know his condition is terminal. We’re all terminal. There are still many things I can do to make things better for him.
I do fail sometimes and just lose it and say things I shouldn’t or yell when I know it upsets him. I think we all do. His illness makes me incredibly sad and missing all the things we had planned for our future makes me incredibly sad. I need to do better.
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I thought my DH was just being negative. Didn't realize it was part of the progression. He is negative about everything. It's hard trying to keep him happy.
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As others have said, you're in the right place with the people here. In my experience, anti-depressants really do help. This is a long process of grief, guilt and depression no matter how well you try to handle it. My DH is in memory care and I still cry everyday because I miss him so much. I grieve for the great times we had, and might have had if not for this disease. Accept all of the help you can get. This is a long haul. Wishing you the best.
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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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