Over the last summer months, I noticed Mother appeared to be leaning more heavily on her arms as she used her walker and becoming more doubled over. She was becoming slower and slower as she walked. I couldn't understand why she was so bent over and reasoned; that it was hot, that she was feeling the heat and not coping with it. I kept the wheel-chair close for when she decided she needed to sit before her legs gave out. Then one morning Mother just couldn't stand, no matter how much she tried with our help (that is the support carer and myself), she could not lift her seat off the bed more than 1 cm! In retrospect, Mother would always say her "bottom was getting heavier". Now I know what she was trying to say.
I rang the Dr who came and saw Mother, then sent her to hospital for investigations. Mother could move her legs normally in bed and believed she could stand, but all attempts to move from sitting position to standing failed, even with expert assistance! Nothing could explain it except blocked messages in her 'planning part' of her brain through Lewy Body Disease. Mother's brain had lost it's ability to produce the complex messages that directed her body through the process of standing. She could move her legs in bed, but when assisting to lift Mother onto her feet, they would become limp and just hang there. Mother had no idea of where her legs were placed or how to move them! The physio at the hospital told me she had seen this pattern before in Lewy Body Disease. It had shown the beginnings in a similar way to Mother with that person leaning heavily on their arms to walk and doubled over. It was not what I was expecting to happen at all. I didn't know mobility could just stop overnight like this. Mother also showed 'spinal' or blocked message symptoms of Urinary retention with over flow and signs of reduced bowel mobility.
As long as Mother could stand, not even walk, but stand, I felt managing her care was fine. I could transfer Mother to her wheelchair, or the shower bench or toilet without too much effort. But now Mother having lost her ability to Stand had huge implications for me. How was I going to manage? I found that out while Mother was in hospital. She was introduced to a Standing-Hoist to transfer her from bed to chair etc with the aid of two persons. While in hospital, Mother also showed increased short-term memory loss and some swallowing difficulties. She also had lots of the typical Lewy Body hallucinations, particularly at night as soon as the shadows began to fall.
Insertion of an IDC (urinary catheter) had lead to a Hospital acquired urinary infection. Interestingly Antibiotics for it took most of the LBD hallucinations away. They are infrequent now. Catheter hygiene care is important for prevention of infection, particularly when contaminated with bowel movements regularly. I found 7-10 ml of antibacterial liquid soap added to her wash water has been effective in keeping her bug free. Disposable 'Baby Wipes' are used for cleaning up after Bowel movements and for washing the lower region, including the catheter with the prepared wash water has been very convenient and successful. Signs of the residual Antibiotic Resistant Pseudomonas from along the catheter/urethral tract leaking discharge onto her continence product have now gone.
The short term memory loss raised the issue of safety for me because mother doesn't remember she can't stand. I use a sensor mat beside her bed or chair, which will alert me as soon as a foot touches the floor and a potential fall may be avoided. It reassures me and I sleep better at night as a result. Mother also pushes the 'test' button (on the sensor mat lead) to call me, which works well, with Mother confusing it for a call bell. One positive about her short-term memory loss is that she doesn't dwell on recent health losses as she doesn't remember. If its not happening now, it didn't exist. Once pain is relieved, "she never had it" when questioned. Once the hoist has disappeared, Mother believes she stood to transfer to the wheel-chair or walked to the lounge herself!
We have settled into a new routine at home now. Mother stays in bed longer in the mornings, having breakfast in bed, then laying back comfortable to enjoy the TV News and travel programs.. During this time her bowels will move just before her morning bed-bath and getting dressed and up with assistance of a hoist, the support Carer and me. Mother then comes to the lounge via wheel-chair, followed by the hoist to transfer her again to her electric Lazy Boy chair. She then has lunch watching the Midday News and spends her afternoon enjoying her favorite magazines and TV programs. She rarely gets visitors. The support carers that assist me twice a day are her 'visitors' she enjoys a chat with. She follows The Royal Family news with interest and joy.
Mother's very easily distracted and has difficulty following the story line when reading or watching TV. She reads much less now. I tape her favorite TV programs which enables her to follow them easier, if I fast forward over the advertisements for her.
Mother doesn't move much. She just lays there, semi-recumbent day and night. She cannot turn herself, so pressure area care is very important. Pressure ulcers have been avoided by vigilant skin care and the use of 'ROHO' cushions. Mother sits on one during the day and her heels rest on another. She has an electric pressure relief air mattress on her bed and still requires a 'ROHO' cushion under her heels/feet. Mother's chair is adjusted from head up for meals to laying back intermittently to re-disperse her weight for pressure relief when in her chair. Once in bed in the evening, Mother is settled on her side and turned again before I go to bed. I turn her again in the middle of the night and again very early in the morning in a 3-4 hourly routine. The turns are a 1/4 turn to relieve her sacrum area overnight, as she is on it all day in her chair. She doesn't cope with a side turn, as her arthritic knees, shoulders and hips become painful in a very short time. She finds a 1/4 turn very comfortable and sleeps well in this position. Mother also needs the turns to prevent gas pains from a sluggish bowel through lack of mobility. She would wake up crying in pain on nights she decided she didn't want turning, so ended up being turned after all. The regular turns have assisted bowel motility and regular daily bowel movements result. She has avoided pressure ulcers so far. As Mother is very heavy, I use a 'slippery' sliding sheet for turning her. When the support carer is present, we use it to lift Mother up the bed for re-positioning. I wouldn't be able to manage without it. We are coping well so far :)
I rang the Dr who came and saw Mother, then sent her to hospital for investigations. Mother could move her legs normally in bed and believed she could stand, but all attempts to move from sitting position to standing failed, even with expert assistance! Nothing could explain it except blocked messages in her 'planning part' of her brain through Lewy Body Disease. Mother's brain had lost it's ability to produce the complex messages that directed her body through the process of standing. She could move her legs in bed, but when assisting to lift Mother onto her feet, they would become limp and just hang there. Mother had no idea of where her legs were placed or how to move them! The physio at the hospital told me she had seen this pattern before in Lewy Body Disease. It had shown the beginnings in a similar way to Mother with that person leaning heavily on their arms to walk and doubled over. It was not what I was expecting to happen at all. I didn't know mobility could just stop overnight like this. Mother also showed 'spinal' or blocked message symptoms of Urinary retention with over flow and signs of reduced bowel mobility.
As long as Mother could stand, not even walk, but stand, I felt managing her care was fine. I could transfer Mother to her wheelchair, or the shower bench or toilet without too much effort. But now Mother having lost her ability to Stand had huge implications for me. How was I going to manage? I found that out while Mother was in hospital. She was introduced to a Standing-Hoist to transfer her from bed to chair etc with the aid of two persons. While in hospital, Mother also showed increased short-term memory loss and some swallowing difficulties. She also had lots of the typical Lewy Body hallucinations, particularly at night as soon as the shadows began to fall.
Insertion of an IDC (urinary catheter) had lead to a Hospital acquired urinary infection. Interestingly Antibiotics for it took most of the LBD hallucinations away. They are infrequent now. Catheter hygiene care is important for prevention of infection, particularly when contaminated with bowel movements regularly. I found 7-10 ml of antibacterial liquid soap added to her wash water has been effective in keeping her bug free. Disposable 'Baby Wipes' are used for cleaning up after Bowel movements and for washing the lower region, including the catheter with the prepared wash water has been very convenient and successful. Signs of the residual Antibiotic Resistant Pseudomonas from along the catheter/urethral tract leaking discharge onto her continence product have now gone.
The short term memory loss raised the issue of safety for me because mother doesn't remember she can't stand. I use a sensor mat beside her bed or chair, which will alert me as soon as a foot touches the floor and a potential fall may be avoided. It reassures me and I sleep better at night as a result. Mother also pushes the 'test' button (on the sensor mat lead) to call me, which works well, with Mother confusing it for a call bell. One positive about her short-term memory loss is that she doesn't dwell on recent health losses as she doesn't remember. If its not happening now, it didn't exist. Once pain is relieved, "she never had it" when questioned. Once the hoist has disappeared, Mother believes she stood to transfer to the wheel-chair or walked to the lounge herself!
We have settled into a new routine at home now. Mother stays in bed longer in the mornings, having breakfast in bed, then laying back comfortable to enjoy the TV News and travel programs.. During this time her bowels will move just before her morning bed-bath and getting dressed and up with assistance of a hoist, the support Carer and me. Mother then comes to the lounge via wheel-chair, followed by the hoist to transfer her again to her electric Lazy Boy chair. She then has lunch watching the Midday News and spends her afternoon enjoying her favorite magazines and TV programs. She rarely gets visitors. The support carers that assist me twice a day are her 'visitors' she enjoys a chat with. She follows The Royal Family news with interest and joy.
Mother's very easily distracted and has difficulty following the story line when reading or watching TV. She reads much less now. I tape her favorite TV programs which enables her to follow them easier, if I fast forward over the advertisements for her.
Mother doesn't move much. She just lays there, semi-recumbent day and night. She cannot turn herself, so pressure area care is very important. Pressure ulcers have been avoided by vigilant skin care and the use of 'ROHO' cushions. Mother sits on one during the day and her heels rest on another. She has an electric pressure relief air mattress on her bed and still requires a 'ROHO' cushion under her heels/feet. Mother's chair is adjusted from head up for meals to laying back intermittently to re-disperse her weight for pressure relief when in her chair. Once in bed in the evening, Mother is settled on her side and turned again before I go to bed. I turn her again in the middle of the night and again very early in the morning in a 3-4 hourly routine. The turns are a 1/4 turn to relieve her sacrum area overnight, as she is on it all day in her chair. She doesn't cope with a side turn, as her arthritic knees, shoulders and hips become painful in a very short time. She finds a 1/4 turn very comfortable and sleeps well in this position. Mother also needs the turns to prevent gas pains from a sluggish bowel through lack of mobility. She would wake up crying in pain on nights she decided she didn't want turning, so ended up being turned after all. The regular turns have assisted bowel motility and regular daily bowel movements result. She has avoided pressure ulcers so far. As Mother is very heavy, I use a 'slippery' sliding sheet for turning her. When the support carer is present, we use it to lift Mother up the bed for re-positioning. I wouldn't be able to manage without it. We are coping well so far :)
