I am so angry about my parents' dementia......there I've said it...
I admit to using this forum as a form of catharsis and therapy, but I don't really feel able to talk much about it on a day to day basis. I have a husband and younger children at home, and older children at University, all of whom need different things from me...I work full time in a pretty intense job which demands 12-14 hour days over 6 days a week, and quite frankly I don't want to bore people with my problems...!...
About 2 years ago it became apparent that something was wrong with my parents who had been living independently in their own home about an hour and a half away from me. Their bank manager called me and asked me to come up for a meeting as she was concerned about their finances. This was the start of a pretty rough period of time, during which I have had to arrange for them both to be assessed at the Memory Clinic, fight for Social Services support, arrange for food deliveries, negotiate with Dad about giving up his driving licence and selling his car, deal with Mum's nocturnal wanderings and the inevitable involvement of the Police, help her through a hospital stay (after a broken hip) and her subsequent admission to 'emergency residential care', and ultimately fight social services (tooth and nail) to allow them to relocate to my home town, so that I can be closer to them and help them through this period of their lives. The situation now is that Mum is in a very good BUPA care home near my place of work, and Dad has a 'Supported Extra Care flat' in a private complex about half a mile from her, and is just about managing to cope on a day-to-day basis with his own personal needs, as he is fed well at lunch in the complex. I manage to see him twice a week, and I take him to see Mum at the weekends.
The brief outline I gave above tells nothing of the additional complexities we've all been through. The development in my father of Grand Mal epilepsy (an horrific fit one Sunday afternoon in front of my 9 year old daughter, when we all thought he was dying and had grabbed the defib from the village hall, whilst we waited for the ambulance to arrive) and the fact that his particular form of dementia can lead him to 'misplace' faces and relationships. He accused me of having an affair with my husband 'under his roof' (he clearly thought I was my mother) and kept writing me obscene notes which I would come home to find, after work. He thought on several occasions that my home was his, and accused my husband and I of trying to sell it from under him...this was when his own house sale was going on and he was living with us for supposedly 2 weeks but which turned into 9 months... During this time he was involved in an argument with a 13 year old boy at the local park whilst walking his little dog...the boy was teasing my dad and this didn't go down well...the upshot was that the boy punched my father in his face, causing him to fall to the ground and break his hip. His head hit the road surface so hard he had a number of brain bleeds, and suffered 'life changing injuries'....there is now a criminal case pending, but my father can remember little of it...(perhaps thankfully)
Meanwhile my mother, once installed in her new residential home, has just degenerated. I had hoped that she might rally a little, her previous emergency placement was awful and she was desperately anxious. The new home is bright clean and well staffed with people who genuinely care about the residents and who try so hard to look after them well. My mother however has become mean and suspicious, and over the last 9 months has simply degenerated. She cannot remember anything of her previous life, not me and my sister, and sometimes, not even Dad either. Initially she was allowing the carers to wash her and dress her quite nicely, but now she sits in a disreputable nightdress all day and rarely gets out of bed...she is horrible to the carers, rude and abusive. I know this is the illness, but I am so angry about it all....I want to be one of those amazing people who visit their loved ones, bring joy and happiness, and I really do try....I always take her chocolate (the only thing she seems to love anymore) and flowers, which seem to cheer her. I have made her memory books of photos and cuttings from our earlier lives, and take her anything I think she might like. But in my heart it depresses me so much....it hangs over me each week, that I have to visit, have to collect Dad and take him to see her, and along the way have to remind him that it is his wife we are going to see not his own mother.....
If I am really honest, I feel that my mother has gone...it is just a shell that remains of her...I see her getting less and less of who she was, and I have such a complex mix of feelings...I'm angry about it, and sad that she is changing, and sometimes I even wish it would just end....and the inevitable would happen. That makes me feel so disgusted and ashamed of myself for thinking this about my mum....My father at least still remembers more of himself and his past life. He is still the person that he was an I fight everyday to help him keep that part of himself. It is hard, and I find myself watching for any further decline in his manner and memory. Logistically he has a little money left from the sale of his house, which pays the (very high) monthly service charge on his flat. It will run out at some point, and then I will have a whole other set of horrible decisions to make...what to do, how to fund it, where he is to go etc...My sister visits them both occasionally, never telling me when she is coming, and then e-mails me a whole set of comments and criticisms about what I need to be doing for them. That's always a hard thing to swallow!
I am sorry to have written so much, and I don't expect that anyone can help me other than sympathetic support, but I didn't feel able to say some of the things I have said here, anywhere else.
I admit to using this forum as a form of catharsis and therapy, but I don't really feel able to talk much about it on a day to day basis. I have a husband and younger children at home, and older children at University, all of whom need different things from me...I work full time in a pretty intense job which demands 12-14 hour days over 6 days a week, and quite frankly I don't want to bore people with my problems...!...
About 2 years ago it became apparent that something was wrong with my parents who had been living independently in their own home about an hour and a half away from me. Their bank manager called me and asked me to come up for a meeting as she was concerned about their finances. This was the start of a pretty rough period of time, during which I have had to arrange for them both to be assessed at the Memory Clinic, fight for Social Services support, arrange for food deliveries, negotiate with Dad about giving up his driving licence and selling his car, deal with Mum's nocturnal wanderings and the inevitable involvement of the Police, help her through a hospital stay (after a broken hip) and her subsequent admission to 'emergency residential care', and ultimately fight social services (tooth and nail) to allow them to relocate to my home town, so that I can be closer to them and help them through this period of their lives. The situation now is that Mum is in a very good BUPA care home near my place of work, and Dad has a 'Supported Extra Care flat' in a private complex about half a mile from her, and is just about managing to cope on a day-to-day basis with his own personal needs, as he is fed well at lunch in the complex. I manage to see him twice a week, and I take him to see Mum at the weekends.
The brief outline I gave above tells nothing of the additional complexities we've all been through. The development in my father of Grand Mal epilepsy (an horrific fit one Sunday afternoon in front of my 9 year old daughter, when we all thought he was dying and had grabbed the defib from the village hall, whilst we waited for the ambulance to arrive) and the fact that his particular form of dementia can lead him to 'misplace' faces and relationships. He accused me of having an affair with my husband 'under his roof' (he clearly thought I was my mother) and kept writing me obscene notes which I would come home to find, after work. He thought on several occasions that my home was his, and accused my husband and I of trying to sell it from under him...this was when his own house sale was going on and he was living with us for supposedly 2 weeks but which turned into 9 months... During this time he was involved in an argument with a 13 year old boy at the local park whilst walking his little dog...the boy was teasing my dad and this didn't go down well...the upshot was that the boy punched my father in his face, causing him to fall to the ground and break his hip. His head hit the road surface so hard he had a number of brain bleeds, and suffered 'life changing injuries'....there is now a criminal case pending, but my father can remember little of it...(perhaps thankfully)
Meanwhile my mother, once installed in her new residential home, has just degenerated. I had hoped that she might rally a little, her previous emergency placement was awful and she was desperately anxious. The new home is bright clean and well staffed with people who genuinely care about the residents and who try so hard to look after them well. My mother however has become mean and suspicious, and over the last 9 months has simply degenerated. She cannot remember anything of her previous life, not me and my sister, and sometimes, not even Dad either. Initially she was allowing the carers to wash her and dress her quite nicely, but now she sits in a disreputable nightdress all day and rarely gets out of bed...she is horrible to the carers, rude and abusive. I know this is the illness, but I am so angry about it all....I want to be one of those amazing people who visit their loved ones, bring joy and happiness, and I really do try....I always take her chocolate (the only thing she seems to love anymore) and flowers, which seem to cheer her. I have made her memory books of photos and cuttings from our earlier lives, and take her anything I think she might like. But in my heart it depresses me so much....it hangs over me each week, that I have to visit, have to collect Dad and take him to see her, and along the way have to remind him that it is his wife we are going to see not his own mother.....
If I am really honest, I feel that my mother has gone...it is just a shell that remains of her...I see her getting less and less of who she was, and I have such a complex mix of feelings...I'm angry about it, and sad that she is changing, and sometimes I even wish it would just end....and the inevitable would happen. That makes me feel so disgusted and ashamed of myself for thinking this about my mum....My father at least still remembers more of himself and his past life. He is still the person that he was an I fight everyday to help him keep that part of himself. It is hard, and I find myself watching for any further decline in his manner and memory. Logistically he has a little money left from the sale of his house, which pays the (very high) monthly service charge on his flat. It will run out at some point, and then I will have a whole other set of horrible decisions to make...what to do, how to fund it, where he is to go etc...My sister visits them both occasionally, never telling me when she is coming, and then e-mails me a whole set of comments and criticisms about what I need to be doing for them. That's always a hard thing to swallow!
I am sorry to have written so much, and I don't expect that anyone can help me other than sympathetic support, but I didn't feel able to say some of the things I have said here, anywhere else.
