One Small Step | Caregiver Action Network

one small step

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one small step

Hi I am caring for my mother with Dementia. I think the time has come to reach out to others who are also in this. My family is very private.I have to break this dynamic in order to address all the issues that are buried in this philosophy I do not know how to bring in help.Or to go against my mom's desire to always be left alone with just me. My father was in denial about my mother and died in denial. My relationship with her is that of a child. Complicated without the Dementia. It is very hard for her to let go of this.And makes caring for her very difficult. I have worked through many things that cause major care giving difficult. Sometimes it is hard to separate her personality from her disease. My mom has always been a loner. It was always her and my father. No friends. She tolerates people barely. Trying to get her to change now is next to impossible. Some people may think it is dementia causing this. But truly it is her personality. My dad was able to get her to minutely involve herself with others. I do not have that power. I find the trying to get her to be socially proper and polite very taxing. By that I mean thank you notes,birthday cards. Forget Christmas cards. My dad always did those. He did everything. She now wants me to step into his shoes. Let her be rude. Not expect anything of her. Bare minimum things If she doesn't want to do something you better be on board or suffer her attacks. She hates water and just trying to get her to drink 4 glasses a day is ridiculous.I am told many rude things. She is not used to being told to do anything she doesn't want to do. Makes simple request next to impossible. So now when she needs guidance and help you have to try and walk a tightrope. I dread the future and all the request I must make of her for her to be safe. She is going to fight me every inch of the way. From nail cutting to eating. I have not has a break from her in 2 and 1/2 years. I have a sister who lives 40 miles away. She is unable to provide a smattering of support. Full of criticisms.Delusional about what mom will or will not do. Never has offered to look after her for 1 day or take her to a doctor appointment or say if you are sick call me. Gives me things she thinks I should do with my mom. Visits for dinner I cook. Never helps with any household needs. I sometimes try and get some advice on fixing something. Her husband just shuts me down. I am not even mad anymore. I realize it is solely my duty. I just need to get some guidance on breaking this privacy lack of any help situation I am in.

(((((((((((((maurmurph))))))))))))) You are right - if your mom has been like this ever since you can remember, then she is most likely not going to change one iota now. I am so sorry that your sister and her husband are unsupportive and dictatorial, this certainly complicates things for you and further isolates you. I guess it is no revelation to you that you cannot continue on like this, for months on end. It sounds like you haven't had a break in quite awhile, and this is a dangerous pattern for you and for her. Your mom will not reach out, and your sister is unwilling to help, so unfortunately, the onus is on you (I know, ANOTHER thing to manage!) to reach out for help. The thing here is, your mom depends on you for care. I know that situational dynamics are difficult to break, but somehow you have to take the upper hand in calling the shots, for your own sake. You need to establish boundaries for yourself and engage any and all resources you can to give yourself a break and spread out the caregiving duties (hopefully with other - paid - caregivers). The environment in which you are living appears very toxic. Daughter or not, you are not obligated to take her abuse and manipulation. Writing this, I do realize the challenges in changing or even modifying a destructive cycle such as this. You care for her and love her, but that doesn't mean you have to take whatever she dishes out. My husband has secondary progressive multiple sclerosis, and after caring for him at home for 15 years, I helped him make the transition to a long-term care facility. Due to damage in his brain from the MS, he exhibits multiple markers of someone with frontotemporal dementia. It has been a difficult journey for us. Perhaps someone with access to connections for dementia caregivers will guide you to avenues of assitance. Wishing you all the best, maurmurph...