Maybe this question was posted prior to my joining this site & if so, please forgive
My husband was diagnosed in 2012, & now needs me for everything. He sometimes gets angry if I leave the room. I don't feel like a person anymore. I don't get to be just me anymore. I don't get to do the things some of the things I used to enjoy. Sometimes I feel resentful, & angry at this disease. Sometimes I am angry at his children for not helping out even though I know in my heart they are busy with… read more
I am my mother's caregiver. My sister helps out some and my husband and son are there with me to help with her, but I feel like this disease is my identity. I don't like it. I feel like I introduce myself as "Hi, I'm Rebeca, my mother has Alzheimer's. I feel resentment also and sometimes hatred and I feel so sorry for myself and then I feel guilty for feeling those things. I love my mom, but it is a long disease and sometimes it seems like there is not end to it. I am sorry, I am not helping you out any, but I just wanted you to know, YOU are not the only one feeling these things. I don't know if they are right or wrong, but I wanted you to know I am here with you on this long journey. Hang in there!
Please don't beat yourself up for these feelings. Its not the retirement I expected and I alot of times not so pleased or happy with my situation. But we do what we can. My mother is never pleased with nothing I do and compares me with my baby brother who she said she wants to live with. He will not call, visit or even ask how she's doing. When I go home I sometime cry or scream. Even question God as to how much more can I do. I feel you , but we'll get through it. Don't blame yourself for these feeling. We have at least here each other to lean on.
@Yank, it sounds like you are doing so many things well. Unfortunately, this process is just too much for any of us many days. @A myALZteam Member said it so well and I'm so glad your are already doing these things. My Sweet RAC and I have been on this journey since 2009 and I get very tired and frequently respond sharply to him. I did take a trip last fall and that was so helpful but this doesn't last to carry us through the day to day for very long. One thing i have done is to locate some volunteer things I can do on my own schedule at home. I also usher at my church as he can sit with someone else for that once a month I have a job. These things help me hold on to myself as a person who contributes to things outside my little life. It allows me to interact with others about something other than my husband's issues. (Don't get me wrong, the support groups, etc are hugely helpful!) I feel just like you; I refuse to let this disease take me too! I saw that happen with my father-in-law and it's very ugly!! Not - Not - Not!!!!
We are into year 10 with this disease. This is not how I (and we) planned to spend my 50s and now 60s. I have all those same feelings you describe. For me I have an online spousal support group I have belonged to since 2009 so we have become like family. Without them, the education I have gotten there, and my computer I would go absolutely insane.
I certainly understand the bad days. They tell us we should not correct them when they are wrong or be upset by our loved ones, but through this journey I have had very bad moments. One day I was giving mother a shower and getting her cleaned up and dressed for the day. We were not getting along. she was angry because she was getting a shower and I continued to try to work with her. I finally had enough all I could handle. I sat her on the toilet and went to the living room and cried. I was getting so angry with her and even though I know it is not her fault, there is still some of my mother in there and she was enjoying giving me the hard time. LOL My husband said "Grams is having a bad day today, but it will be ok".. I was able to have a good cry and then went back and the whole attitude had changed and we were able to finish up and go shopping and enjoyed the day. I am lucky to have my husband to count on, but I get the feel sorry for myself sometimes. It is very hard to care for someone with ALZ.