Can I Do This?
I wonder if anyone else feels fundamentally unsuited to care for someone with dementia?
This is who I am.
I have had life long depression episodes that I do my best to manage. I thrive best when my physical environment is orderly. . I do not work well under time pressure. I am introverted (do not seek social contact). I am risk averse. I am very empathetic (sometimes things bother me that others can ignore). I am fact based. I strive to understand the why of things. I am very self sufficient and do not like asking for help.
My DH is still functioning pretty well. However, he shadows me, repeatedly asks the same questions, cannot do much independently, wants to argue rather than discuss things and has other changes. In short, his personality and abilities have changed significantly.
I am so stressed, unhappy and struggle daily with varying levels of depression that I can’t imagine things getting worse and coping with more. I am losing myself more and more each day. I am being challenged beyond my capabilities already.
I am not seeking advice.
I just wonder, if in fact, there are other caregivers who also feel deep inside they are fundamentally unsuited to do this.
Comments
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I have my moments, but they do seem to pass. I certainly feel unqualified.
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When you describe your personality, I feel like we share a lot of similar traits. I've had chronic mild depression off and on throughout my life and I've been able to manage it until now. One difference is that I enjoy variety, novel and intense experiences. I'm an introvert, but still like social connections, so the isolation of caregiving is very difficult. My husband moves and hides things, so I have to constantly make sure I haven't put important things where he can find them - this makes me feel so anxious, like my physical environment is out of control.
I was a psychotherapist for many years, so people assume I should be a natural caregiver, but that's not the case. I had lots of empathy and patience for my clients and for raising my son, but this is different. I feel trapped, and like I have nothing at all to look forward to except to just make it through another day. We can seldom leave the house because his behavior is so unpredictable. I'm actually worried about myself at this point! I'm looking at placement because I feel like I'm reaching a point where I can't continue.
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I did not feel that I would do well as a full-time caregiver, and I did not want to give up my career. My dh had early onset, meaning that I could expect to be still working age when he passed, leaving me with no current experience or professional contacts.
When he got to the point that he could not be left home alone, I placed him in a very nice memory-specific assisted living place, where he has remained, transferring to the more serious care units as he progresses. That provided him with companionship and activities and me with an adult life, work and some travel.
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These are some of the saddest and most difficult comments I have read on this site. Perhaps this is where memory care facilities, hospice and any other facilities available are best used. It seems it would be the kindest and best option for all concerned. We all struggle but some more than others. My heart goes out to you.
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I feel the same way you do @WIGO23 .
I am so grateful for this site because at least I know I am not alone. Some days I think I can do it but then other days I am in the dumps. Please know you are not alone. Sending hugs to you. Hang in there and do what you think is best for you.
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Yes, this new life is one that I do not want.
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I asked myself the same question caring for my wife's journey. I finally realized I needed help from caregivers, assisted living, memory care and then finally hospice. I know I could not get through it myself but it took a while to realize it. This forum was helpful in giving me a heads up as to what I might expect.
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I try me very best every day but it is taking a heavy toll. My husband can still do his ADLs but he shadows me, goes everywhere with me, listens to my phone calls, sits and watches while I dress or brush my teeth. My strong independent spirit is struggling to survive. I feel like Cinderella, scrubbing the floors and doing all the work without Prince Charming. DH can do little to help and has trouble ambulating any distance. Today at the dr my weight was up and my BP was elevated. The chronic stress of 7 yrs of categiving is taking its toll and it scares me. DH is more emotionally needy than anything else at this pt but refuses to try hobbies, activities, day program, etc. He expects me to plan and carry out activities daily for him or his sits in his chair all day watching TV. I'm needing chunks of time daily to be by myself, here at home, going for a walk or just time without him. I know that sounds harsh but I'm really struggling with high level chronic stress. Not sleeping much because of his severely disruptive sleep pattern. He's not far enough along for memory care but my health is going south and I am worried about myself for a change. I can't save him but I need to save myself. I've got to find some type of compromise. Struggling and worried with BP that use to be 128/60 and today 158/68. I know things need to change. This is so darn hard!
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My patience is good most days, but it is starting to wear thin. I feel just like you. My DH also shadows me all day long. I cannot get anything done. I have tried caregiving when I need to be gone for several hours, but it is stressful having a stranger in our home.
He also does all his ADL’s and feel I can take a walk, or run to nearby grocery store, but he wants to go everywhere with me. He was once a busy guy and would never follow me around.
I am in my 70s and get depressed because I feel my life is behind me. Not a life we expected in our retirement. I look at other couples and friends and life goes on for them. Cloudy cold winter days do not help. Tomorrow is a new day and I will start fresh.
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My DH started showing symptoms a couple of years ago and it took some time to convince him and his PCP that he needed to be tested. He was diagnosed with dementia 5 months ago. He is still functioning pretty well; most of his issues are short-term memory so he asks the same questions several times a day, but he is still able to take care of his daily needs. He drinks more than he should and that is a problem some days. When I read these discussions I realize the long, difficult journey we have ahead of us. I appreciate the honesty shared on this site as it helps me have more realistic expectations. I pray for peace and understanding for all.
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I can’t express how much I relate to your post; it’s as though you read my mind.
I’m struggling with maintaining my sense of self and trying to not get lost in what’s likely to be a very long and trying ordeal. This may sound horrible, but I focus on my mental health more than on my husband’s, because I have a family history of suicides… my maternal grandmother and my own mother. I will try to keep him safe and comfortable for as long as I can.
I’m about to turn 73 in 2 weeks and I too feel as though my life is behind me. I did see my own PCP last week and asked for help with the depression. I have the prescription but haven’t started taking them yet.
Thank you all for your openness and honesty in these posts. You help me more than I can express.
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I totally understand. I am going through the same things. I feel so alone at times.
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I have focused on my husband's health much more than my own. Things I noticed but filed away as aging, things I couldn't ignore and then the battery of tests to rule out any possible causes, the MCI diagnosis and now VD. I realize I have neglected my own physical and mental health because I was taking care of him and doing everything else. I agree with ChanceRider, I am prioritizing my own health, I have to. Easier said than done with an emotionally needy DH but I have to stay healthy. It won't be good for either of us if my health fails. New daily routines for me where I make time to listen to relaxation cds, gentle stretching/yoga exercises, a daily morning walk, time in the afternoon to read and a hot bath before bed. I haven't prioritized myself in 8 yrs, it's long overdue! My husband is still able to take care of himself and sits much of the day in his recliner watching TV. He will be fine while I carve out time each day for my needs. He won't like it but it is necessary for my health and I dont know how much longer I can do this if I don't get contol of my own life and sanity.
I know there are so many out there struggling to do it all and maintain some control over their lives. Please reach out and post. It helps others knowing we are not alone.
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Many comments in this discussion describe my own feelings very well. Not depression in my case, but feeling helpless and under extreme stress. My wife was diagnosed with Alzheimer's about 10 years ago in her early 60s. Her decline has been long and slow. At first I did not mind taking care of her increasing needs and I even found it to be a rewarding experience. It is now impossible to take care of her on my own. Our friends, our siblings even our children are now mostly advising memory care. Easy for them to say (even if they are correct). This will be the most difficult decision of my life but at least I am now sure of one thing: Even during the period when I thought I was handling the situation well, I was slowly giving up everything else that mattered to me.
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dear @WIGO23 and all,
When we forfeit the ability to plan and just try to get through each day it is so easy to loose our self identities. Nothing to look forward to and no sense of accomplishment.
I’ve taken notes on what some of you are doing to stabilize your mental health - thank you for some ideas that might work for me. I’m ready to try anything to get out of this dark mood!
I hope we all have a quiet and uneventful New Year’s Eve. God bless us, everyone!
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Thank you all for your openness. It makes me sad to know that so many of us are struggling in a similar way but at the same time I feel understood and supported.
My only hope for 2026 is that I cope with what comes, nothing more nothing less.4 -
Wose,
I was especially touched about your honesty of not caring if you die first or even welcoming it. When my most depressed thoughts win, I feel the same. At that point I usually shutdown emotionally. I perform robotically through the day, nearly silent and very detached. I try to distract myself reading or doing a puzzle when I can. I am relieved once bedtime arrives, DH goes to sleep and I try to sleep as well. If I am lucky, the next morning I can battle to come back alive. If not, I may stay in the robot state longer. So far, eventually something inexplicably lifts me back to a better place where I cope better and the robotic state subsides. I am still sad, still without hope, but just enough better to get through another day.
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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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