Hello everyone. I have spent the last 5 days on this site reading everything I could read on this horrible disease, dementia. My heart bled for every post I read because I can relate to what you are all going through with your loved ones.
I started full time, 3 years ago looking after my dear MIL who was diagnosed with mild dementia. We've had a few things that have set us back but for the most part, managed very well at my home. Then.... the last four months happened. A UTI and cellulitis landed her in the hospital and she has never been the same. She is dying now.
Before this set back, she was still walking around the house with a walker for exercise, had a complete schedule during the day and all that is gone now. The ups and downs you all seem to be so familiar with. I know I don't have to explain. One day I think she will not make it through the day and the next blows me right out the door. She will want water and a few bits of food. She will sit up for an hour (every couple of days) and then want to go back to bed. I may not be able to get her up for another 2 days because she is soooooo weak. I do everything you guys do. I have powered greens in her cranberry juice, the best nutritious vitamin drinks...I even use coconut oil to hopefully 'smooth' out her brain a little. I feel so defeated because I actually thought I could make her better after the 4 week stay in the hospital.
Tonight, my husband and I are sure there is cellulitis on her ankle again. I drew a pen mark around it. We have all decided that she will not have anymore hospital visits and the doctor has 'the plan' that I dread more than anything if infection starts again. We are not going to allow her to suffer anymore.
My husband took time off of work to help me because I simply can't do it alone anymore. We are so tired because she calls for water every night and I thought they lost the desire for water in the end? We get up and she only wants little sips and then she calls for more after we get back in bed. She seems to be constantly thirsty? Please forgive me for letting this all out right now. We have cried together at least once a day and our nerves are 'shot'. It causes sooo much confusion.
She still seems to recognize my husband and I ...although she has started to call me 'nurse'. Some mornings she really fights me now while changing her diapers. She doesn't know day from night and is now sleeping 20 -24 hours a day. Tonight we had no other choice but to get her up so we could change her bed. She sat and drank 2 cups of tea and had a little bite of toast. It totally surprized me? She was smiling and seemed alert.
I will talk to the doctor tomorrow because there has been no bowel movement for 6 days and I am worried. We want so much for her to have a peaceful death. (although, I must admit, I'm getting a bit scared to find her 'gone')
I do have palliative care coming in 2 days a week now and we are waiting for a hospital bed which will make all of this this a little easier. She has become dead weight.
She is the most precious woman....still will look up and tell you that she's feeling just fine. She's amazing and doesn't even know she's dying. She still whispers 'thank you' to everything we do for her. She is so weak. I know this is a waiting period and we'll just go day by day.
Thank you for reading this very long post. I just needed to talk to people who would understand how frustrating and mind boggling this disease is. Again...thank you. And bless you all who have loved ones who have this terrible disease. I wish you all much peace tonight.
Sincerely, Margee
I started full time, 3 years ago looking after my dear MIL who was diagnosed with mild dementia. We've had a few things that have set us back but for the most part, managed very well at my home. Then.... the last four months happened. A UTI and cellulitis landed her in the hospital and she has never been the same. She is dying now.
Before this set back, she was still walking around the house with a walker for exercise, had a complete schedule during the day and all that is gone now. The ups and downs you all seem to be so familiar with. I know I don't have to explain. One day I think she will not make it through the day and the next blows me right out the door. She will want water and a few bits of food. She will sit up for an hour (every couple of days) and then want to go back to bed. I may not be able to get her up for another 2 days because she is soooooo weak. I do everything you guys do. I have powered greens in her cranberry juice, the best nutritious vitamin drinks...I even use coconut oil to hopefully 'smooth' out her brain a little. I feel so defeated because I actually thought I could make her better after the 4 week stay in the hospital.
Tonight, my husband and I are sure there is cellulitis on her ankle again. I drew a pen mark around it. We have all decided that she will not have anymore hospital visits and the doctor has 'the plan' that I dread more than anything if infection starts again. We are not going to allow her to suffer anymore.
My husband took time off of work to help me because I simply can't do it alone anymore. We are so tired because she calls for water every night and I thought they lost the desire for water in the end? We get up and she only wants little sips and then she calls for more after we get back in bed. She seems to be constantly thirsty? Please forgive me for letting this all out right now. We have cried together at least once a day and our nerves are 'shot'. It causes sooo much confusion.
She still seems to recognize my husband and I ...although she has started to call me 'nurse'. Some mornings she really fights me now while changing her diapers. She doesn't know day from night and is now sleeping 20 -24 hours a day. Tonight we had no other choice but to get her up so we could change her bed. She sat and drank 2 cups of tea and had a little bite of toast. It totally surprized me? She was smiling and seemed alert.
I will talk to the doctor tomorrow because there has been no bowel movement for 6 days and I am worried. We want so much for her to have a peaceful death. (although, I must admit, I'm getting a bit scared to find her 'gone')
I do have palliative care coming in 2 days a week now and we are waiting for a hospital bed which will make all of this this a little easier. She has become dead weight.
She is the most precious woman....still will look up and tell you that she's feeling just fine. She's amazing and doesn't even know she's dying. She still whispers 'thank you' to everything we do for her. She is so weak. I know this is a waiting period and we'll just go day by day.
Thank you for reading this very long post. I just needed to talk to people who would understand how frustrating and mind boggling this disease is. Again...thank you. And bless you all who have loved ones who have this terrible disease. I wish you all much peace tonight.
Sincerely, Margee
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