Julia Warren
New member
- Joined
- Jan 28, 2011
- Messages
- 8
- Reason
- Loved one DX
- Country
- UK
- State
- Sussex
- City
- Brighton
Hello,
I have used this website a lot during my Mum’s ilness but I have never posted on it. Now, a few months after my Mum passed over, I thought I ought to share with you some of my experiences that you may find useful.
My Mum had a bulbar onset, but because she had been for a long time on a lot of medication (steroids, statins etc) we thought that her symptoms were side effects of the drugs she was taking as both statins and steroids are related to muscle weakness and wasting. She had first symptoms (slight difficulty speaking) about two years before she passed over.
Mum’s speech problems were becoming increasingly pronounced and eventually, after about a year or so, she lost her speech completely and relied on a lightwriter - a little machine on which you type and it shows what was written, and also, it can speak. It is just a marvellous device. We never really thought, until the very end, when my Mum’s last finger became disfunctional and she couldn’t type anymore that our conversation suffered. So, do not worry, it is really not as bad as one fears at first, and with the help of the lightwriter you just carry on having almost normal convesation. My Mum’s lightwriter was SL35 but I am aware that a new type is available now (SL 38) that can speak many other languages than English.
Another issue that you may have to look into relatively early on is adapting the bathroom. Mum was trying to be independent for as long as she could but eventually she needed help while taking a shower, and her little bathroom was changed into a wet room. We found that the shower chair that is usually attached to the wall was useless because there was no access from all sides (from two sides only) and transfers became very difficult. We used a small bathroom chair on wheels (with padded seat) that can be used in the bathroom, and also goes over the toilet (very important!). We were transferring Mum from her armchair directly into that chair, and this made the process much easier. It is important that you fasten a belt around the person and tie it at the back of the chair, so that she/he doesn’t fall forwards. We used just a piece of cloth (like a scarf); the belts that medical people suggest proved to be very uncomfortable. This chair has sort of removeable feet that you place person’s feet on; we found that one always has to pay attention to appropriate position of those, it can very painful when you don’t.
One thing that is absolutely essential is a comfortable chair. My Mum was spending in it almost 23h a day as she was very uncomfortable in her bed. She had an electric reclining chair, where you could lower the back independently of the position of the legs. Most chairs are sort of sinchronised – when back lowers, leg support goes up. This doesn’t work well because you may want to lower back a bit without changing the position of the legs. The chair’s arms should not be too high, they need to give a good support to one’s arms. She had her chair rented from Red Cross, same with the wheelchair and the hospital bed. The bed wasn’t comfortable enough, although it was electric and had some basic functions. We found that she really needed very sophisticated bed that had a range of functions; She was supposed to get one like that from the hospital but that was all too late.
And one more very important piece of equippment – a hoist. It is absolutely essential, and you should hire it as soon as you can. For some time we were getting Mum out of her chair by supporting her from both sides, then we were using just a cardigan that we fastened at Mum’s back, and we pulled both sleeves while holding under each of Mum’s arms. That was very good and much better than any of the ways of getting a person up suggested by the occupational and other therapists. At that stage Mum was still able to support herself on the walking frame while we were transferring her to her bath chair. Then we used a portable hoist which was uncomfortable and a very hard work. Eventually she had an electric ceilling hoist that was a wonderful machine, and we only regret we waited far too long to get it. For anyone who cannot imagine what it looks like, there are metal bars on the ceiling in the shape of a square/rectangle and an additional bar across. A seat is attached to it and there are slings that you put around a person’s back and legs to secure her and transfer into a chair, bathroom chair, bed etc.
I feel that the most important piece of advice is to get equipment sorted as early as possible. Although medical people are aware what MND is and how it progresses, thay sort of wait until there is absolute panic or it is too late. Apart from lightwriter, they never suggested anythig that could make our Mum more comfortable and our life easier. We had to find out ourselves and fight for it. Don’t wait until your loved one really needs it because then you may still wait weeks if not months, and struggle in the meantime. If you know the progression of the disease, you know that you will need everything I mentioned above. Our Mum could not sleep in her bed because it was uncomfortable, so for months she stayed in the reclining chair day and night. If she had a sophisticated bed as we seen while she was in the hospital, the quality of her last months of life would be so much better.
A few more items that may help: nebuliser (again you can rent it), it helped with breathing. She was using it a few (5-6 or as needed) times a day. In the later stages she always wanted to keep the windows wide open as the problem with breathing was becoming more serious. We found that a little fun was useful, you could use a bigger one to be more effective.
For a long time Mum was on Ensure Plus; feeding with a small spoon was best as she was chocking easily when she drunk through the straw and she could not hold the straw in her mouth easily. You will need some sheets for protecting clothes; we used baby matts (they last long) that we cut and tied at the back, and we bought from a pharmacy a large bib with “a pocket”. When you put a longish plastic box (one of the “Really Useful Boxes” inside, it will collect drink that is spilt. She did not want to have a PEG tube fitted.
When there is no movement the legs tend to become swallen, so change of position is useful. We were advised Epsom salts to bath her feet in. Theses salts are available quite cheap in garden centres or any pharmacy. You use a hadnful in warm water two/three times a day for about 15-20 minutes. I think that there are some alternative therapies that help to feel comfortable, e.g. gentle massage, Reflexology or Bowen techniques. Our Mum never really used any.
Also, although Mum wasn’t really using the wheelchair as she felt very uncomfortable in it, I am aware that there are good chairs with a neck support and nicely padded, so they are more comfortable. When neck muscles become weaker and it is hard to hold the head stright, it is useful to have a neck support. We bought one from a good pharmacy. You just have to measure how high and long it should be. They are adjustable by velcro fastening.
I think that lack of proper equipment makes life very difficult and causes extra stress, as if the disease itself wasn’t bad enough. You should never think ahead of how terrible is it going to be when your loved one doesn’t speak or have to use wheelchair or needs to be helped in the bathroom or in the toilet. It all comes gradually and sort of naturally. And when it comes it is somehow “normal” bacause you passed certain stages already and you are “ready” for it. Do not worry in advance, this will make the last moments that you have left with your loved one worse. Even if they don’t speak anymore, keep talking to them and not over them (I noticed that’s what some people do). Some people can write messages (not type) until the end, so communication is always there.
In the end Mum was unable to concentrate on watching TV but she was happy to listened to her favourite music through the Ipod.
When the time comes that they are ready to leave I believe one should let them go. I only imagined myself in my Mum’s position and thought – where would I rather be? She was ready to go six months earier and those last months were the most difficult. We were there when our Mum passes over, and although it was so sad and I felt happy for her, that she doesn’t need to suffer anymore and to be so dependent.
I am not religious but I believe that in some form we survive physical death. During my Mum’s illness I read a lot of spiritual literature (and there is lots of it out there) and it helped me enormously. I think of Mum every single day and I do often feel extremely sad, but knowing ( believing) that she is fine now, that she can talk, walk, sing, dance and enjoy her life wherever she is, gives me comfort.
I can give you a few titles so perhaps you may wish to have a look. Sometimes it is difficult to know where to start, but once you read someting and it talkes to you, you may feel a need to look for more. I started from Raymond Moody’s “Life after Life” he is a cardiac doctor and writes about NDE (Near Death Experience). It is an old book but a simple and a good one. You may wish to look at books by Doris Stokes (she was a very well known medium, who was a lot on TV in the eighties), Anthony Borgia (“The Life in the world unseen” available through Internet)). I think even if you are very religious it won’t hurt to have a look at the literature that may give you comfort and hope. At the end of the day all religious beliebe in afterlife.
I’m sorry this is a bit too lengthy but I thought that a practical advise may be of some use. Just try to be strong and enjoy what you can, don’t get too depressed; your loved ones need you and need to see you coping.
With all my love and Blessings to you all.
Julia
I have used this website a lot during my Mum’s ilness but I have never posted on it. Now, a few months after my Mum passed over, I thought I ought to share with you some of my experiences that you may find useful.
My Mum had a bulbar onset, but because she had been for a long time on a lot of medication (steroids, statins etc) we thought that her symptoms were side effects of the drugs she was taking as both statins and steroids are related to muscle weakness and wasting. She had first symptoms (slight difficulty speaking) about two years before she passed over.
Mum’s speech problems were becoming increasingly pronounced and eventually, after about a year or so, she lost her speech completely and relied on a lightwriter - a little machine on which you type and it shows what was written, and also, it can speak. It is just a marvellous device. We never really thought, until the very end, when my Mum’s last finger became disfunctional and she couldn’t type anymore that our conversation suffered. So, do not worry, it is really not as bad as one fears at first, and with the help of the lightwriter you just carry on having almost normal convesation. My Mum’s lightwriter was SL35 but I am aware that a new type is available now (SL 38) that can speak many other languages than English.
Another issue that you may have to look into relatively early on is adapting the bathroom. Mum was trying to be independent for as long as she could but eventually she needed help while taking a shower, and her little bathroom was changed into a wet room. We found that the shower chair that is usually attached to the wall was useless because there was no access from all sides (from two sides only) and transfers became very difficult. We used a small bathroom chair on wheels (with padded seat) that can be used in the bathroom, and also goes over the toilet (very important!). We were transferring Mum from her armchair directly into that chair, and this made the process much easier. It is important that you fasten a belt around the person and tie it at the back of the chair, so that she/he doesn’t fall forwards. We used just a piece of cloth (like a scarf); the belts that medical people suggest proved to be very uncomfortable. This chair has sort of removeable feet that you place person’s feet on; we found that one always has to pay attention to appropriate position of those, it can very painful when you don’t.
One thing that is absolutely essential is a comfortable chair. My Mum was spending in it almost 23h a day as she was very uncomfortable in her bed. She had an electric reclining chair, where you could lower the back independently of the position of the legs. Most chairs are sort of sinchronised – when back lowers, leg support goes up. This doesn’t work well because you may want to lower back a bit without changing the position of the legs. The chair’s arms should not be too high, they need to give a good support to one’s arms. She had her chair rented from Red Cross, same with the wheelchair and the hospital bed. The bed wasn’t comfortable enough, although it was electric and had some basic functions. We found that she really needed very sophisticated bed that had a range of functions; She was supposed to get one like that from the hospital but that was all too late.
And one more very important piece of equippment – a hoist. It is absolutely essential, and you should hire it as soon as you can. For some time we were getting Mum out of her chair by supporting her from both sides, then we were using just a cardigan that we fastened at Mum’s back, and we pulled both sleeves while holding under each of Mum’s arms. That was very good and much better than any of the ways of getting a person up suggested by the occupational and other therapists. At that stage Mum was still able to support herself on the walking frame while we were transferring her to her bath chair. Then we used a portable hoist which was uncomfortable and a very hard work. Eventually she had an electric ceilling hoist that was a wonderful machine, and we only regret we waited far too long to get it. For anyone who cannot imagine what it looks like, there are metal bars on the ceiling in the shape of a square/rectangle and an additional bar across. A seat is attached to it and there are slings that you put around a person’s back and legs to secure her and transfer into a chair, bathroom chair, bed etc.
I feel that the most important piece of advice is to get equipment sorted as early as possible. Although medical people are aware what MND is and how it progresses, thay sort of wait until there is absolute panic or it is too late. Apart from lightwriter, they never suggested anythig that could make our Mum more comfortable and our life easier. We had to find out ourselves and fight for it. Don’t wait until your loved one really needs it because then you may still wait weeks if not months, and struggle in the meantime. If you know the progression of the disease, you know that you will need everything I mentioned above. Our Mum could not sleep in her bed because it was uncomfortable, so for months she stayed in the reclining chair day and night. If she had a sophisticated bed as we seen while she was in the hospital, the quality of her last months of life would be so much better.
A few more items that may help: nebuliser (again you can rent it), it helped with breathing. She was using it a few (5-6 or as needed) times a day. In the later stages she always wanted to keep the windows wide open as the problem with breathing was becoming more serious. We found that a little fun was useful, you could use a bigger one to be more effective.
For a long time Mum was on Ensure Plus; feeding with a small spoon was best as she was chocking easily when she drunk through the straw and she could not hold the straw in her mouth easily. You will need some sheets for protecting clothes; we used baby matts (they last long) that we cut and tied at the back, and we bought from a pharmacy a large bib with “a pocket”. When you put a longish plastic box (one of the “Really Useful Boxes” inside, it will collect drink that is spilt. She did not want to have a PEG tube fitted.
When there is no movement the legs tend to become swallen, so change of position is useful. We were advised Epsom salts to bath her feet in. Theses salts are available quite cheap in garden centres or any pharmacy. You use a hadnful in warm water two/three times a day for about 15-20 minutes. I think that there are some alternative therapies that help to feel comfortable, e.g. gentle massage, Reflexology or Bowen techniques. Our Mum never really used any.
Also, although Mum wasn’t really using the wheelchair as she felt very uncomfortable in it, I am aware that there are good chairs with a neck support and nicely padded, so they are more comfortable. When neck muscles become weaker and it is hard to hold the head stright, it is useful to have a neck support. We bought one from a good pharmacy. You just have to measure how high and long it should be. They are adjustable by velcro fastening.
I think that lack of proper equipment makes life very difficult and causes extra stress, as if the disease itself wasn’t bad enough. You should never think ahead of how terrible is it going to be when your loved one doesn’t speak or have to use wheelchair or needs to be helped in the bathroom or in the toilet. It all comes gradually and sort of naturally. And when it comes it is somehow “normal” bacause you passed certain stages already and you are “ready” for it. Do not worry in advance, this will make the last moments that you have left with your loved one worse. Even if they don’t speak anymore, keep talking to them and not over them (I noticed that’s what some people do). Some people can write messages (not type) until the end, so communication is always there.
In the end Mum was unable to concentrate on watching TV but she was happy to listened to her favourite music through the Ipod.
When the time comes that they are ready to leave I believe one should let them go. I only imagined myself in my Mum’s position and thought – where would I rather be? She was ready to go six months earier and those last months were the most difficult. We were there when our Mum passes over, and although it was so sad and I felt happy for her, that she doesn’t need to suffer anymore and to be so dependent.
I am not religious but I believe that in some form we survive physical death. During my Mum’s illness I read a lot of spiritual literature (and there is lots of it out there) and it helped me enormously. I think of Mum every single day and I do often feel extremely sad, but knowing ( believing) that she is fine now, that she can talk, walk, sing, dance and enjoy her life wherever she is, gives me comfort.
I can give you a few titles so perhaps you may wish to have a look. Sometimes it is difficult to know where to start, but once you read someting and it talkes to you, you may feel a need to look for more. I started from Raymond Moody’s “Life after Life” he is a cardiac doctor and writes about NDE (Near Death Experience). It is an old book but a simple and a good one. You may wish to look at books by Doris Stokes (she was a very well known medium, who was a lot on TV in the eighties), Anthony Borgia (“The Life in the world unseen” available through Internet)). I think even if you are very religious it won’t hurt to have a look at the literature that may give you comfort and hope. At the end of the day all religious beliebe in afterlife.
I’m sorry this is a bit too lengthy but I thought that a practical advise may be of some use. Just try to be strong and enjoy what you can, don’t get too depressed; your loved ones need you and need to see you coping.
With all my love and Blessings to you all.
Julia
