Swollen ankles....

[MrsChristmas]

Hi there,

Happy New Year!

My mother is in the early stages of dementia, she lives on her own and has refused all care. She's 93 and been widowed for several years. My sibling does the practical care from his home miles away.

I don't see as much as of her as I should but I run a business which takes up most of my time, I live on my own and my own home to run.

I believe that mum should have some sort of support but my sibling will not go against mum's wishes.

Social care have been contacted as well as mum's GP has been to visit and has diagnosed that mum has capacity. Social Care have visited several times but it seems that mum has told them she is okay.

We have explored attendance allowance but we have to put Alzheimer's on the form and my sibling won't agree to signing it (we have power of attorney between us) without showing it to mum.

We saw mum in December for a meal out and it was struggle to get her to walk to the restaurant. She said it was a corn on her foot that was giving her pain.

I saw mum over Christmas again, going out on Christmas eve. Her ankles were so swollen that we couldn't get my daughter's size 6 boots over mum's ankles. Mum can't walk very far without holding on two people.

On Christmas day mum was with me but very unsteady on her feet, having to hold onto things as she walks around. Mum eats okay and really enjoyed xmas dinner that I cooked for her. However, her food got stuck in her throat and she was in a lot of pain and I had to walk her home. (she lives next door to me).

Mum can only wear boot slippers (with the backs broken down) because of her ankles and she sort of shuffles along. So there was me walking mum home in her floppy slippers sort of holding her up on Christmas afternoon, with mum coughing due to her food being lodged in her chest.

There was one incident that I feel disloyal talking about but I am concerned. Mum couldn't get to the toilet in time and had an accident and has to borrow clean underwear off me.

I have rung mum and she is okay now although she accused me of wanting to put her into care and I told her that is not what I want but I wished that she would accept some outside help.

I am going to back to work and will be working very long hours in 2019 and will not be there to help mum.

I am really worried about her but she seems happy enough.

 

[sinkhole]

Swollen ankles are relatively common IME. If they are really bad, elevate her legs somehow so her feet are slightly above the rest of her body and that should reduce the swelling. Are the feet/ankles looking purple at the same time?

My mum has this condition from time to time. Once, a few weeks ago I saw them when we were trying to find her some slippers to wear and I was quite shocked how swollen and purple they were.

It might be a good idea for the GP to see her as it can be a sign of a heart condition. They will probably get blood tests done, which is not a bad thing to do in any case as that will give an overall picture of her health and any deficiencies which may need to be addressed.

You really should get attendance allowance sorted out. I can't understand what your sibling is thinking! If money isn't an issue to you all then OK but every little helps. Is your sibling willing to help with visits and care?

My mother was also 93 before she would even consider any care but I persisted and eventually she realised she couldn't cope and caved in just in time. If you are going to be working long hours then you can't be expected to provide all the care she's going to need going forward. You could try suggesting a carer coming just for a few hours a week to help with 'household chores' so it doesn't make her feel as though she's giving up her independence.

 

[karaokePete]

Hello @MrsChristmas. Happy New Year to you too.

It's an unfortunate reality that people are often reluctant to accept help and there is a great fear of dementia and Care Homes.

As dementia progresses, as it always will, physical problems with mobility and swallowing etc will often develop and increase the risk to health.

The only thing I can think of is that you concentrate on the physical aspect such as the Lymphoedema which seems to be present and get your mother to the GP on that basis, but then pass a letter with all your concerns to the GP at the appointment.

 

[maryjoan]

I agree with karaokePete - get Mum to the doctors under a pretext - it's what I did with my other half - but get the letter to the Dr before the appt, so he/she has time to read it and consider it when you are seen.

 

[MrsChristmas]

Hello there,

Thank you very much for your helpful replies.

This has been a long saga and I have had some great help from this forum since I joined in June 2015.

I have battled with mum for years over this and has caused our relationship to deteriorate badly. Mum is very suspicious of my motives. I have suggested mum seeing her GP many times but she stubbornly refuses and gets very 'shirty' with me. I will try again but I suspect I will be fobbed off. She just gets very angry with me and shuts me down.

It took a lot of courage for me to even speak to social care who have been wonderful but it seems there is little they can do. I have loads of conversations with mum's GP who visited this year through social care.

Mum is (in her head) very independent but she's not really as my sibling runs her home and comes to visit every 3 months. He is aware of the hours I work and we have both warned mum that she is very much on her own if she won't accept outside help.

Yes, her ankles are swollen and purple Sinkhole...and have been for a while.

It is heartbreaking seeing mum like this and I really do feel the time has come for her to accept some help. However, I cannot battle with her anymore because of my work commitments and her lack of trust. I have spoken to my sibling many times about this but he says that it's mum's choice and that there is little we can do until 'the wheels fall off'...as he says.

I will speak to mum again about her ankles and perhaps email her GP?

I know I am clutching at straws but I do appreciate your advice.

Thank you.

 

[Amy in the US]

@MrsChristmas , it is nice to see you again, but I'm so sorry about the worries about your mum.

The dementia (or another medical problem) is the cause of the incontinence, not you, and most of us here have experienced it and aren't shocked or surprised to hear it. I know it's a difficult aspect of dementia, not to mention unpleasant, but I assure you that you are not being disloyal by mentioning it. On the contrary, it is in your mother's best interests to have someone looking out for her. If she broke her leg, would it be disloyal to mention that and get help for it? This is no different, except you can't "see" the brain damage.

The swallowing problem also worries me as this may be again, due to the dementia and if she does have a swallow problem, it puts her at risk of aspiration pneumonia, as well as causing discomfort and difficulty eating.

I would definitely contact her GP with concerns about the edema, the swallow issues (she needs a SALT consult), and the incontinence (I'd ask for the incontinence nurse or team in her area to visit). The GP needs to know what is going on.

It's possible the incontinence is due to an infection or other problem and not the dementia, but it needs to be checked out either way.

It is hard when we have to make decisions about what the person needs and not what they want, or what we want, or what any of us would have wanted. Someone from a support group once told me "care needs drive the decision making" and it's true. Health and safety needs have to come first.

I know where your sibling is coming from and it is not easy. It's hard when the person still looks and seems like themself, but can no longer always make well reasoned decisions. I don't mean to add to your stress and anxiety. I've been a long distance carer and it is really tough. I had to wait for the crisis and eventually my mum did get help.

It may be best not to mention anything about the GP to your mum, as it will only cause problems for you, and just deal directly with the GP.

I wish I had better ideas for you. I'm so sorry. Wishing you all the best and I hope you will keep us informed.

 

[Ludlow]

Just a small point, but there is no need to put the word "Alzheimers" on the Attendance Allowance form. I got Attendance Allowance for my mum at least a year before we managed to get a diagnosis but she would have had a similar problem with the word. You just have to describe exactly what she needs help with. Of course your mum may not like that either, but if it's just the label she objects to then don't use it. They may follow up with the GP so make sure s/he is fully aware of how it is impacting your mother so that they can corroborate.

 

[Rosettastone57]

Just a small point, but there is no need to put the word "Alzheimers" on the Attendance Allowance form. I got Attendance Allowance for my mum at least a year before we managed to get a diagnosis but she would have had a similar problem with the word. You just have to describe exactly what she needs help with. Of course your mum may not like that either, but if it's just the label she objects to then don't use it. They may follow up with the GP so make sure s/he is fully aware of how it is impacting your mother so that they can corroborate.

My MIL had AA before the dementia diagnosis albeit the lower rate due to her mobility issues. As others have said it's not dependent on the diagnosis. Forgive me if I have this wrong ,but you mentioned AA forms back in June and this time last year. Your brother then was against it because he didn't want to have DWP or AA on a bank statement which your mum might see. Now it's because the word Alzheimer's might be seen by your mum . It's very hard to progress things when involving your mum in the decision making process. I'm sorry I don't have a magic answer I'm afraid. Sometimes you have to wait for a crisis before help becomes a necessity.

 

[Lawson58]

I am very concerned about the swelling in your mum's ankles as it could be very uncomfortable and could well be the reason she is struggling to walk.

My husband has suffered with heart disease for many years and has had episodes of swollen ankles on quite a few occasions. He had cellulitis which required intensive antibiotics and you need to be aware that this can lead to sepsis, a very serious condition.

He recently became quite unwell with massive amounts of fluid on his legs which was caused by a deterioration in his heart and he now takes increased dosage of diuretics. He felt bloated and lost his appetite and struggled to walk. It has had quite an impact on the progression of his Alzheimers.

Kidney problems can also cause fluid retention so I think you need to get her seen by a doctor as soon as possible. I am sure she will feel better when this is sorted out but I believe it needs doing sooner rather than later.

 

[Shedrech]

hi @MrsChristmas
I do agree with Lawson58
your mother's GP needs to see her - could you take photos of her legs and send them so the GP can see how bad they are and ask that they make a home visit to look into this concern, along with everything else
tell the GP that your mother may szy she doesn't wznt help but she needs it, and as there is a duty of care, the GP needs to be involved

 

[MrsChristmas]

Hello there again,

I feel I'm being a bit of nuisance to everyone, especially at this holiday time. I am so grateful for your help and support as I have no one to talk to about this and this forum has been my life saver. I can't talk to my sibling about it because he lives miles away and is very, very practical. All he will say is that we have talked about this problem for months and, unless or until mum falls ill, there is nothing we can do. He maintains that she has capacity and should therefore be included in any decisions made about her life.

I spoke to my sibling last night and still the same stance from my sibling, no change. However, once I had explained to him what had happened over Christmas he agreed with me that Mum's GP should be contacted so I'm going to do that this week before I go back to work. It did get a little heated between us because we are coming from two perspectives - he wants to include mum in everything and abide by want she wants - whereas I am for overriding mum, doing what's best for her by arranging what she needs not what she wants. Until we can come to the same point of view, mum will continue to deteriorate and there is nothing I can do about that. Sad and frustrating as it is.

The attendance allowance forms have been shelved indefinitely because my sibling doesn't agree to doing them 'behind mum's back' and I just don't have the time now. I did try once and even got a lady from mum's GP surgery to help me but caved in once I had spoken to my sibling. He run's mum's finances said it would be down to me if I went ahead with the forms, he would not take responsibility.

My sibling thinks mum's swollen ankles are due to her sitting down most of the time and the pain due a corn on her little toe. We have both suggested a Chiropractor visiting mum but she just brushes the suggestion away.

I am now going to call the Surgery today if they are open or Wednesday.

Thank you again so much for your help, all of you.

Happy New Year.

 

[MrsChristmas]

Sorry, not Chiropractor...chiropodist....

 

[sinkhole]

See if you can get GP to do a home visit. I'd say it's appropriate considering the circumstances and will get around any objection she might come up with to go there.

 

[MrsChristmas]

Hi there
Just a short note that I have been in contact with mum's GP surgery and it seems that I need to speak to mum first and try and persuade her to go to the GP as the surgery advise that they can't do anything without mum agreeing to it. So, before I go back to work this Friday I'll have more stab at persuading mum to see the GP. That's all I can do...

 

[Grannie G]

It`s a pity the surgery can`t think of a way to invite your mum to the surgery, eg for a well woman checkup or something like that.

My husband was invited for a diabetic check up when I expressed my concerns.

 

[witts1973]

Hi my advice would be to visit the CAB as they have helped many people to get AA for a loved one and then somebody can claim carers allowance,and with regards to the GP,I would ask for a home visit,have a little chat with him and he/she will know how to play that

Hi there
Just a short note that I have been in contact with mum's GP surgery and it seems that I need to speak to mum first and try and persuade her to go to the GP as the surgery advise that they can't do anything without mum agreeing to it. So, before I go back to work this Friday I'll have more stab at persuading mum to see the GP. That's all I can do...

Ok best of luck,that doesn't seem very helpful if she has dementia with regards to what they have said to you,maybe it's different for me as I'm my mums carer and I live at home, I asked to be known on her notes as the person that they should be talking to as mum has dementia,it would be good if your mum could get visits from a community nurse now and again too

 

[Rosettastone57]

Hi my advice would be to visit the CAB as they have helped many people to get AA for a loved one and then somebody can claim carers allowance,and with regards to the GP,I would ask for a home visit,have a little chat with him and he/she will know how to play that


Ok best of luck,that doesn't seem very helpful if she has dementia with regards to what they have said to you,maybe it's different for me as I'm my mums carer and I live at home, I asked to be known on her notes as the person that they should be talking to as mum has dementia,it would be good if your mum could get visits from a community nurse now and again too

Hi @witts1973 I think the opening poster has a problem with applying for AA because her sibling won't apply "behind the mother's back" . The mother always has to agree with anything and if course the default answer is always going to be no. @MrsChristmas I feel for you ,I really do. It's a very frustrating situation. If your sibling can't deal with AA forms, he's in for a big shock when things become increasingly difficult.

 

[MrsChristmas]

Thank you for your kind words Rosetta - it's good to talk to people who 'know' what I am going through and who are probably experiencing far worse than I what am dealing with.

This situation reminds me of what I went through when my father was ill. At that time I was looking after my family as a single parent and no sibling around (he was working) to help me make decisions..then. My father had been ill for many years but no-one knew what was wrong with him. He used to go to his GP (treat him like a mate) get loads of paracetamol but would not allow my mum to go with him. We were all kept in the dark, sometimes it was his back or his stomach...

One evening my father told my son that he was seeing black figures on the wall, I dare not mention a visit to the GP because I knew I'd get blown of the water and mum had given up trying to persuade him to go the GP and sort out whatever was wrong with him. My son had a friend who was training to be a geriatric social worker so he'd been getting some guidance.

A few weeks later, my father was tottering about hallucinating so my son and I decided to tackle my father head on between us. My son (21 at the time) had been primed by his friend as to what to say and I just stood by waiting for the fireworks. Nothing happened, my father just accepted everything my son said. We called an ambulance, paramedic arrived and I got in the ambulance with father to casualty. Six hours later he was diagnosed with brain cancer and given 2 months to live. He was 88.

There was no one telling me then 'it's up to my father to decide' I took the decision and I had my very dear son to support me.

It's all so different now as my son lives abroad and my father taught my mother very well how to keep everyone in the medical profession at bay and her family at arm's length.

The one person that I had hoped I could rely on for support to get mum the helps she so desperately needs (not wants) has decided to 'sit on the fence' - my sibling who conveniently lives miles away.

I do feel very alone sometimes - but thank goodness for this forum.

I wish everyone a happier 2019.

 

[Lawson58]

Could you suggest to your sibling that he Googles 'swollen ankles' ?

There is a heap of information available and he just might discover that his understanding of your mother's health issues could benefit from a little intelligent research.

Good luck with it!