Mom keeps leaning forward...

[Ionna]

Hi all, I wonder if anyone can help??
Mom has been leaning forward for about 6 months now. It seemed to be related to an increase in her pain medication (for her cancer tumours). When being toileted she would fold over and almost fall off the loo or commode. She tends to sit correctly in her chair or in bed.
In the past weeks mum has been leaning forward all the time while on the commode (I stopped taking her to the bathroom 2 months ago as she had become so unsteady on her feet especially after an episode of leaning (hope this makes sense!).
When I try to seat her upright she deliberately pushes herself down which is really frustrating and must be uncomfortable to be sat with her head over her knees - pressing on her tumour. I don't know what to do next.
I am really at a loss how to progress from here. Mom is putting so much strain on her body and mine - I 'm not sure how long I can continue to care for her as I am constantly suffering from wrist, shoulder and back pain. If anyone can shed light on the situation I'd be really grateful.

Many thanks

 

[tre]

My husband has no other health issues but also tends to lean forwards. His consultant advised that changes in the brain owing to the dementia can distort the sense of balance. various other carers who attend our support group have also seen the same thing.
I would check with your mum's GP as to whether the medication is causing the problem and if anything can be changed to make things easier, but, if like for us, it is just the dementia I think you are stuck with it.
Tre

 

[Acco]

If your mum isn't distressed or in pain through some other health cause then I believe it is likely due to her dementia causing problems with muscle control or balance. My wife has times when she bends forward, almost doubled up, and it is difficult or almost impossible to get her sitting back upright. I understand the difficulty you face and the toll it can take upon you in trying to support or improve your mum's position, an experience I have been going through very recently. Fortunately, my wife seems to improve and sit more normally most often, although stooping whilst standing seems almost permanent. It wouldn't surprise me if my wife's bending forward reappears again, as changes seem often to disappear and later resurface. Because of your mum's situation it may be helpful to discuss the situation with her GP.

 

[Lizziedalia]

Hi all, I wonder if anyone can help??
Mom has been leaning forward for about 6 months now. It seemed to be related to an increase in her pain medication (for her cancer tumours). When being toileted she would fold over and almost fall off the loo or commode. She tends to sit correctly in her chair or in bed.
In the past weeks mum has been leaning forward all the time while on the commode (I stopped taking her to the bathroom 2 months ago as she had become so unsteady on her feet especially after an episode of leaning (hope this makes sense!).
When I try to seat her upright she deliberately pushes herself down which is really frustrating and must be uncomfortable to be sat with her head over her knees - pressing on her tumour. I don't know what to do next.
I am really at a loss how to progress from here. Mom is putting so much strain on her body and mine - I 'm not sure how long I can continue to care for her as I am constantly suffering from wrist, shoulder and back pain. If anyone can shed light on the situation I'd be really grateful.

Many thanks

Hi Ionna,

My mum is now in a nursing home. She is at the early advance stage of the illness. During a visit end of 2014, I saw my mum bending forward while sitting on a chair with no support for the head or arms and here she was half sleeping. This was the first time and it gave me a fright. There have been several reasons : 1) I found out she was underfed (less than 44 kgs). 2) She needed more adapted physiotherapy sessions. 3) She did not have an adapted chair to sit down. 4) Her medication needed to be changed. Measures were taken rapidly by the medical team. Today my mum has gained 5 kgs. She has regained some strength in the upper body thanks to the physiotherapy sessions and more food. She can walk and sit down again without bending forward. The staff is making sure that she is sitting on a chair with arms and back support. She has a new medication. When I take my mum outside, since she can walk only very short distances, I am taking her in a wheelchair. My mum is using incontinence pads day and night. So I don't know whether this will help you but it can give you some ideas how to alleviate both your physical pain to carry your mum and your mum's discomfort and make her more secure as well as making your life a bit easier while caring for your mum. She might need a soft belt to secure her ? Have you got an adapted chair: your mum might need to lay down most of the time rather than sitting ? You might also need some extra help from a carer for certain cares eg when toileting her? Or you might toileting her in bed if adapted ? I must say that my mum entered the nursing home at the right time as I could not have been able to lift her (eg bath) or carry her (she could not climb the stairs in her home anymore). Lizziedalia-

 

[Ionna]

My husband has no other health issues but also tends to lean forwards. His consultant advised that changes in the brain owing to the dementia can distort the sense of balance. various other carers who attend our support group have also seen the same thing.
I would check with your mum's GP as to whether the medication is causing the problem and if anything can be changed to make things easier, but, if like for us, it is just the dementia I think you are stuck with it.
Tre

Hi hope you are well. Thanks for responding. The GP did visit on Monday. He's a man of few words and didn't really have much to say on the matter. I have been able to adjust the commode so that the front legs are higher than the back. This seems to have helped and she sit's up right more often. I think you are right...it's probably the dementia

 

[Ionna]

If your mum isn't distressed or in pain through some other health cause then I believe it is likely due to her dementia causing problems with muscle control or balance. My wife has times when she bends forward, almost doubled up, and it is difficult or almost impossible to get her sitting back upright. I understand the difficulty you face and the toll it can take upon you in trying to support or improve your mum's position, an experience I have been going through very recently. Fortunately, my wife seems to improve and sit more normally most often, although stooping whilst standing seems almost permanent. It wouldn't surprise me if my wife's bending forward reappears again, as changes seem often to disappear and later resurface. Because of your mum's situation it may be helpful to discuss the situation with her GP.

Good evening Acco, I am beginning to feel that things will not improve in this area - though as you say certain symptoms do come and go. Mums leaning issues had improved for the past 2 days, but today she has been leaning again - but not as much as before. The Palliative Nurse came to visit and did ask about it. They are at a loss if it is related to pain or dementia. I think you may be right though.
Sorry to hear that you and others have also been living through the same situation. Nothing about this illness is easy...everything is such a battle. Still, tomorrow is another day and we must all press on.

Take care

 

[Ionna]

Hi Ionna,

My mum is now in a nursing home. She is at the early advance stage of the illness. During a visit end of 2014, I saw my mum bending forward while sitting on a chair with no support for the head or arms and here she was half sleeping. This was the first time and it gave me a fright. There have been several reasons : 1) I found out she was underfed (less than 44 kgs). 2) She needed more adapted physiotherapy sessions. 3) She did not have an adapted chair to sit down. 4) Her medication needed to be changed. Measures were taken rapidly by the medical team. Today my mum has gained 5 kgs. She has regained some strength in the upper body thanks to the physiotherapy sessions and more food. She can walk and sit down again without bending forward. The staff is making sure that she is sitting on a chair with arms and back support. She has a new medication. When I take my mum outside, since she can walk only very short distances, I am taking her in a wheelchair. My mum is using incontinence pads day and night. So I don't know whether this will help you but it can give you some ideas how to alleviate both your physical pain to carry your mum and your mum's discomfort and make her more secure as well as making your life a bit easier while caring for your mum. She might need a soft belt to secure her ? Have you got an adapted chair: your mum might need to lay down most of the time rather than sitting ? You might also need some extra help from a carer for certain cares eg when toileting her? Or you might toileting her in bed if adapted ? I must say that my mum entered the nursing home at the right time as I could not have been able to lift her (eg bath) or carry her (she could not climb the stairs in her home anymore). Lizziedalia-[/QUOTE

Hi Lizziedalia,
Thank you too for your response. Can't believe that there were so many ways they could assist your mum. It sounds as though she is in a good home that has reacted well to the problem. I think my first problem is getting hold of the mental health nurse. I did call and leave a message on Monday, but no response. Mom has been on Memantine since Sept. She did come off it for about 6 weeks before that - she was is a bad way and wouldn't take anything, was unable to walk due to an unexplained swollen leg...there was all sorts going on. Her meds have not been reviewed and I get the impression that the cancer has taken precedence so no one is really interested in the dementia, but that is the illness that causes the most issues when trying to care for her.
Mom has lost weight, especially at the beginning of the year. She still eats well and drinks just over one and half litres of fluid each day.
She has never been given physiotherapy - not sure she would tolerate it now.
The OT team have been excellent and mom was well equipped with a deluxe recliner and toilet frames, boosters and her commode has good support but as I mentioned she deliberately chooses to sit forward.Mom has been wearing pads for a few years now. I still try to toilet her as she is not double incontinent. I have a hoist so myself and the carers will try it tomorrow. Hopefully mom will be OK and not get upset and stop use trying to get her in harness. Thing is we can only roll her one way due to the cancer on the right side of her body.
Well, you have certainly given me food for thought and I will try to contact the mental health team again as they have not visited since early February.

All the best and thanks once again.

 

[Lizziedalia]

Hi Ionna,

My mum is now in a nursing home. She is at the early advance stage of the illness. During a visit end of 2014, I saw my mum bending forward while sitting on a chair with no support for the head or arms and here she was half sleeping. This was the first time and it gave me a fright. There have been several reasons : 1) I found out she was underfed (less than 44 kgs). 2) She needed more adapted physiotherapy sessions. 3) She did not have an adapted chair to sit down. 4) Her medication needed to be changed. Measures were taken rapidly by the medical team. Today my mum has gained 5 kgs. She has regained some strength in the upper body thanks to the physiotherapy sessions and more food. She can walk and sit down again without bending forward. The staff is making sure that she is sitting on a chair with arms and back support. She has a new medication. When I take my mum outside, since she can walk only very short distances, I am taking her in a wheelchair. My mum is using incontinence pads day and night. So I don't know whether this will help you but it can give you some ideas how to alleviate both your physical pain to carry your mum and your mum's discomfort and make her more secure as well as making your life a bit easier while caring for your mum. She might need a soft belt to secure her ? Have you got an adapted chair: your mum might need to lay down most of the time rather than sitting ? You might also need some extra help from a carer for certain cares eg when toileting her? Or you might toileting her in bed if adapted ? I must say that my mum entered the nursing home at the right time as I could not have been able to lift her (eg bath) or carry her (she could not climb the stairs in her home anymore). Lizziedalia-[/QUOTE

Hi Lizziedalia,
Thank you too for your response. Can't believe that there were so many ways they could assist your mum. It sounds as though she is in a good home that has reacted well to the problem. I think my first problem is getting hold of the mental health nurse. I did call and leave a message on Monday, but no response. Mom has been on Memantine since Sept. She did come off it for about 6 weeks before that - she was is a bad way and wouldn't take anything, was unable to walk due to an unexplained swollen leg...there was all sorts going on. Her meds have not been reviewed and I get the impression that the cancer has taken precedence so no one is really interested in the dementia, but that is the illness that causes the most issues when trying to care for her.
Mom has lost weight, especially at the beginning of the year. She still eats well and drinks just over one and half litres of fluid each day.
She has never been given physiotherapy - not sure she would tolerate it now.
The OT team have been excellent and mom was well equipped with a deluxe recliner and toilet frames, boosters and her commode has good support but as I mentioned she deliberately chooses to sit forward.Mom has been wearing pads for a few years now. I still try to toilet her as she is not double incontinent. I have a hoist so myself and the carers will try it tomorrow. Hopefully mom will be OK and not get upset and stop use trying to get her in harness. Thing is we can only roll her one way due to the cancer on the right side of her body.
Well, you have certainly given me food for thought and I will try to contact the mental health team again as they have not visited since early February.

All the best and thanks once again.

Hi Ionna: To make short a long story I am the one who has alerted the nursing home, as my mum was left without proper Alzheimer care. One of the main reasons I have found out is that they are not yet adapted to Alzheimer’s sufferers (not all the stages of the illness). Hence if you have a parent in a nursing home, it is mostly recommended to visit regularly and check that all is in order. After all, “you” are supposed to be the person who knows best your parents, in particular if they suffer Alzheimer’s. You may be right for your mum, who is suffering from cancer and Alzheimer’s: knowing that there is no cure yet for the latter, cancer may be given precedence. However, have you inquired with doctors whether both treatments are not “conflicting” in your mum’s case? If my mum was developing another illness (keeping my fingers crossed), I would be very worried about how it would it affect her general state of health. She has already lost her “intellect”: we both communicate with our hearts and feelings. I assume your mum is at home not in a nursing home. Due to varying circumstances, my mum – unfortunately – could not remain in her home. I dread the day when she will have hardly any mobility left and be confined in a disability chair all day long, as my mum is not the kind to remain sited. I wish you all the best in your efforts to find ways of making your Mum’s daily life and yours a bit “lighter”. Lizziedalia-

 

[Ionna]

Hi Ionna: To make short a long story I am the one who has alerted the nursing home, as my mum was left without proper Alzheimer care. One of the main reasons I have found out is that they are not yet adapted to Alzheimer’s sufferers (not all the stages of the illness). Hence if you have a parent in a nursing home, it is mostly recommended to visit regularly and check that all is in order. After all, “you” are supposed to be the person who knows best your parents, in particular if they suffer Alzheimer’s. You may be right for your mum, who is suffering from cancer and Alzheimer’s: knowing that there is no cure yet for the latter, cancer may be given precedence. However, have you inquired with doctors whether both treatments are not “conflicting” in your mum’s case? If my mum was developing another illness (keeping my fingers crossed), I would be very worried about how it would it affect her general state of health. She has already lost her “intellect”: we both communicate with our hearts and feelings. I assume your mum is at home not in a nursing home. Due to varying circumstances, my mum – unfortunately – could not remain in her home. I dread the day when she will have hardly any mobility left and be confined in a disability chair all day long, as my mum is not the kind to remain sited. I wish you all the best in your efforts to find ways of making your Mum’s daily life and yours a bit “lighter”. Lizziedalia-

Good evening Lizziedalia,
Sorry it has taken so long to respond. I have had quite a week/weekend! I apologise for the misunderstanding regarding the fact that you alerted the nursing home. You are right, whether the person is in a home or private residence you do have to keep an eye on what is going on. My mom had to be moved from Birmingham to London so I can appreciate how difficult it would have been to move your mother from her home.
I have asked the GP and Palliative team if the illnesses would conflict, but have been told on numerous occasions that I should treat both as one as in end they will pretty much look the same. When a meeting was called between all 3 services (GP, DN and Palliative) in feb, one of the team described looking after my mom as a "mopping up" exercise. I don't feel they are bothered...
Mom's mental health nurse hasn't contacted me since Feb. I have called several times to check that mom's meds are still appropriate, but she never calls back.
Still as I keep saying to myself...we press on and hope that we have the strength to get through tomorrow and I thank the lord for each day that we have together.
Take good care of yourself and I wish you and your family well.

 

[WIFE]

"Mom's mental nurse has not contacted me since February" - I would make very strong noises in that direction - it does not seem a satisfactory situation at all especially as you are phoning to check your Mother's medication. Unfortunately its often the one who shouts loudest and longest who is heard these days. Stay strong and good luck.
WIFE