Don't know what to do, haven't got a clue !

[Kate27]

Hi, I am new to this forum and hope to find help or advice from someone regarding a very new and upsetting change that had occurred with my mum, aged 86 who was diagnosed with Alzheimer's a couple of years ago. My mum also has severe arthritis and is now totally wheelchair dependent. For more than three years I have been providing support to my dad,aged 87 who is my mums primary carer. I live some distance from their home so have spent 3 days (and nights) per week with them in their home during this period. My sister, who lives closer to them has been sharing my mums care on the other days but does so in the mornings mostly and returns to her own home. They have additional support from other siblings as well regarding driving, shopping etc. but being male , they are unable to help with my mums personal care .

In recent weeks, mum has had rapid mood changes and become 'cross', agitated and irritated, for no apparent reason. However, on two occasions last week, she became extremely angry with my father and accused him of having an affair with me! It was both shocking and upsetting, coming out of the blue, and it's really hard to know how to handle this situation. My mum only settled again after I had physically left their home. We are aware that this is probably 'Sundowning Syndrome', as it happened in the early evening on both occasions.

What do we for? How do we approach this? It's so difficult for all concerned, particularly my dad. I honestly don't know how much my mum remembers these episodes, but she behaved in a very uncomfortable, embarrassed manner following the first outburst.

I want to continue helping as before and it will be impossible for my sister to provide the necessary help everyday. Getting outside carers in is something which we have been able to avoid so far, as it will change the equation substantially and impact the home environment. My parents have always enjoyed their 'privacy' at home, have been married for more than 60 years and have pledged to each other, many years ago, never to ' put one another into a residential home'. We would love for them to be able to keep this promise and want very much to provide the necessary support and care they need.

I hope someone can give us some advice. Thanks.

 

[Louby65]

Hello Kate27. First of all welcome to this wonderful forum , where you will get a lot of support and advice - I know I have. As you say this is out of character so I would suggest you make an appointment with your GP and describe what happened . He/she should do a physical and mental assessment of your mum . It could be infection that has changed your mums mood and may be helped by medication . Unfortunately it could also be a progression of this horrible disease but the GP may be in a position to provide something to alleviate any mood swings . Though it won't diminish them completely it might make things more manageable . I admire your parents devotion to each other and also your support to them . I know first hand how difficult it can be to manage all the complex issues involved in looking after someone with dementia, but I also know you can't do it alone . Does your mum attend any memory clinics / day centres . If not , is this a possibility ? Also contacting Alzheimers Society will no doubt be a great resource for good advice . I employ a carer to help me look after my mum as I do it mostly on my own . There was a bit of resistance at first but my mum absolutely adores her now and I see a big difference in my mums moods . I'm sure someone will come along with some good advice but I just wanted to let you know I hope your mum settles soon and wish you well. Lou

 

[arielsmelody]

Would it be so bad if you did get some more outside help with your mum's care? My mum had a spinal injury about two years ago, and my dad is her primary carer but they live too far from other family for anyone else to help. They have four care visits a day for my mum's personal care and the carers are all lovely cheery people - in fact my dad quite misses the company if my mum is ill and spends time in hospital. Maybe if you could get help with one or two visits and you could spend some nights at your sister's house instead, it would help give them a bit more space. Another advantage to trying to introduce carers now would be if you or your sister were ever ill and you really needed more help.

 

[Amy in the US]

Kate, welcome to TP.

It sounds like your mother requires quite a bit of care, given the Alzheimer's, arthritis, and wheelchair.

I agree that a call to the GP is in order, if only to rule out an UTI and/or other infection (which can cause all sorts of problems, including changed behaviour, and is common in persons with dementia) and maybe to ask about medications. I would ask about pain management for the arthritis, in particular. Sometimes the PWD is experiencing pain but cannot articulate it clearly, and this can cause sleep disturbances and a host of other problems. Apologies if this is already being managed, but it can't hurt to ask.

The mood swings could certainly be a part of the progression of the disease, and/or part of sundowning. You probably know this, but sundowning isn't limited to the evening hours; it can begin in early- or mid-afternoon.

Whatever the cause, it can definitely be upsetting for everyone involved. The delusions and confusion, are very distressing, as you say.

I understand wanting to honour promises and keep your parents together at home for as long as possible. No one wants to go into a care home or residential care. However, please consider the idea that at some point, it may be necessary for this to happen. I am thinking of perhaps the necessity for respite care if, say, your father were in hospital with a broken wrist, or you were on holiday, or responding to a family emergency, or something of the sort? Or even if, you and your sister both came down with the flu at the same time and couldn't provide care for a couple of weeks?

If you were to investigate options now, and introduce help of some sort, it would make it easier than having to scramble when there is a crisis, or a change in condition. For example, it's possible that at some point your mother will become incontinent, and that of course means more work in caring. Or she might suffer a minor injury that requires something like regular dressing changes.

Another idea to consider, besides carers for your mother, is domestic help of some sort: cleaning, laundry, cooking, shopping, errands, gardening, repairs around the house, that sort of thing. As your parents age (and their house does as well!) and your mother's Alzheimer's disease progresses, there will be more and more work to care for her, and it might help to have some of the domestic burden lightened.

It's possible that the best way to provide help, is to not try to do it all yourselves, all the time.

Wishing you all the best.

 

[Kate27]

UOTE=Louby65;1219827]Hello Kate27. First of all welcome to this wonderful forum , where you will get a lot of support and advice - I know I have. As you say this is out of character so I would suggest you make an appointment with your GP and describe what happened . He/she should do a physical and mental assessment of your mum . It could be infection that has changed your mums mood and may be helped by medication . Unfortunately it could also be a progression of this horrible disease but the GP may be in a position to provide something to alleviate any mood swings . Though it won't diminish them completely it might make things more manageable . I admire your parents devotion to each other and also your support to them . I know first hand how difficult it can be to manage all the complex issues involved in looking after someone with dementia, but I also know you can't do it alone . Does your mum attend any memory clinics / day centres . If not , is this a possibility ? Also contacting Alzheimers Society will no doubt be a great resource for good advice . I employ a carer to help me look after my mum as I do it mostly on my own . There was a bit of resistance at first but my mum absolutely adores her now and I see a big difference in my mums moods . I'm sure someone will come along with some good advice but I just wanted to let you know I hope your mum settles soon and wish you well. Lou[/QUOTE]


Thank you Lou and we will check for an infection first of all. Getting mum out and about has become much more difficult as her ability to get in and out of a vehicle from her wheelchair, has diminished in the last few months. We will need to procure a vehicle with a tail lift to ensure her safety in this regard. Also, it is now winter and she does not like the cold so is less motivated to leave the house.

Getting other carers in is being suggested by other respondents as well, and we may have to proceed with this process, even as a back up plan. Thanks again and please keep forwarding any other useful suggestions you may have.

 

[Kate27]

Would it be so bad if you did get some more outside help with your mum's care? My mum had a spinal injury about two years ago, and my dad is her primary carer but they live too far from other family for anyone else to help. They have four care visits a day for my mum's personal care and the carers are all lovely cheery people - in fact my dad quite misses the company if my mum is ill and spends time in hospital. Maybe if you could get help with one or two visits and you could spend some nights at your sister's house instead, it would help give them a bit more space. Another advantage to trying to introduce carers now would be if you or your sister were ever ill and you really needed more help.

Thanks Ariel for your suggestion which is being echoed by other respondents. We will probably have to proceed in this direction. Thanks again, Kate27

 

[Amy in the US]

I am sure between the cold and the wheelchair, your mum is not excited to leave the house! My mother never cared much for the cold but her Alzheimer's has either made this worse, or her perception of it, or something. Last winter, when she was still living on her own, was a very cold one here and I think she went weeks without venturing outside. Certainly she has become more sensitive to touch and how fabrics feel and that sort of thing, since her diagnosis, and so I suppose the temperature sensitivity could be related to the dementia as well?

Sorry for the rambling. I was wondering, can the GP make a house call, or can you take a urine sample to the surgery for analysis? I know others here on TP do that, to save making a trip.

 

[Kate27]

Kate, welcome to TP.

It sounds like your mother requires quite a bit of care, given the Alzheimer's, arthritis, and wheelchair.

I agree that a call to the GP is in order, if only to rule out an UTI and/or other infection (which can cause all sorts of problems, including changed behaviour, and is common in persons with dementia) and maybe to ask about medications. I would ask about pain management for the arthritis, in particular. Sometimes the PWD is experiencing pain but cannot articulate it clearly, and this can cause sleep disturbances and a host of other problems. Apologies if this is already being managed, but it can't hurt to ask.

The mood swings could certainly be a part of the progression of the disease, and/or part of sundowning. You probably know this, but sundowning isn't limited to the evening hours; it can begin in early- or mid-afternoon.

Whatever the cause, it can definitely be upsetting for everyone involved. The delusions and confusion, are very distressing, as you say.

I understand wanting to honour promises and keep your parents together at home for as long as possible. No one wants to go into a care home or residential care. However, please consider the idea that at some point, it may be necessary for this to happen. I am thinking of perhaps the necessity for respite care if, say, your father were in hospital with a broken wrist, or you were on holiday, or responding to a family emergency, or something of the sort? Or even if, you and your sister both came down with the flu at the same time and couldn't provide care for a couple of weeks?

If you were to investigate options now, and introduce help of some sort, it would make it easier than having to scramble when there is a crisis, or a change in condition. For example, it's possible that at some point your mother will become incontinent, and that of course means more work in caring. Or she might suffer a minor injury that requires something like regular dressing changes.

Another idea to consider, besides carers for your mother, is domestic help of some sort: cleaning, laundry, cooking, shopping, errands, gardening, repairs around the house, that sort of thing. As your parents age (and their house does as well!) and your mother's Alzheimer's disease progresses, there will be more and more work to care for her, and it might help to have some of the domestic burden lightened.

It's possible that the best way to provide help, is to not try to do it all yourselves, all the time.

Wishing you all the best.

Thank you Amy for your response and we will have the possibility of infection investigated.

I take your point about the outside help both for caring and domestic tasks. Ultimately, all of us will have to accept that this is the preferred way forward.

Have you any suggestions as to how we can avoid triggering any similar outbursts from my mum or do we have to accept that these are unavoidable ?

Very many thanks again, Kate 27

 

[Louby65]

Me again Kate27. When my mum had her aggressive outbursts last year , her GP referred her to a psychiatrist who stayed that the use of antidepressants had a place in managing the symptoms of dementia . He commenced my mum on trazadone 50mgs once a day . This also helps her sleep as it's side effect is it can make you drowsy . I give her it at 6pm and it promotes sleep . It has also curbed her agitation and outbursts . I also give my mum paracetamol , there is research available endorsing it's use in reducing agitation in dementia . I also use diversional therapy a lot , playing games , listening to music , going for runs in the car . My mums mobility isn't good either and she now uses a wheelchair but we still go for runs in the car which she loves , or maybe it's the coffee and cake she loves more when we stop at a coffee shop / garden centre . If I think of anything else I will let you know . Best wishes . Lou

 

[Amy in the US]

Kate, that's a really good question about avoiding the outbursts and upset. I wish I had a clear answer for you, but do not.

If you're not familiar with the compassionate communication idea, you might want to read up on that. I never can seem to find the right link to that but will have a go later, or perhaps someone will beat me to it. Not every technique works with every person all of the time, but you never know unless you try.

I only have experience with my mother (moderately advanced Alzheimer's and no short term memory), and what I've heard from other people, including my mother's wonderful neurologist. Here is what I can tell you.

Many PWD (persons with dementia) suffer from delusions at some point. A delusion is a false, fixed belief, such as: the staff are stealing my socks. For whatever reason, delusions often seem to involve theft, poisoning, and other unpleasantness.

So, let's say the PWD has a delusion that their socks are being stolen by the staff. The PWD's family might respond, Mum, don't be ridiculous, nobody is stealing your socks, who would want them? They're just in the laundry or misplaced. Stop saying that. I can guarantee that if my mother said her socks were being stolen, that is EXACTLY what I would be saying, in my head.

Well, another approach would be to say, really? your socks?? (incredulous tone of voice); tell me about your socks, and then let the PWD tell you all about this delusion of stolen socks and which socks and whatever. Then you might say, I can see you're really upset about your socks. Tell you what, let me look into that for you and I'll see what I can do. Then you change the subject and/or distract the person with an activity, snack, cup of tea, walk, whatever.

One of my mother's delusions is that a certain staff member gives my mother "a tonic" (her term) that causes my mother to break out in hives in her mouth. It's a very complex delusion and involves the GP and all sorts of confabulations. I let her go through the spiel and say, "goodness, Mother, that's terrible, I'm so sorry to hear that" and "really?" quite a lot. Then when she demands to know what I'm going to do, I say, I will look into that for you and let you know what I find out. Then I distract her with food (either biscuits, or ice cream, never fail to work). So far, so good.

Unfortunately the PWD, even if unable to remember a particular conversation, may be able to retain not only a negative emotion resulting from that conversation, but also a link to a person associated with that negative emotion. This also happened with my mother, when she was sectioned and again when she moved into the care home. She couldn't remember being in hospital, but she remembered being upset with me. She also couldn't remember moving into the care home, but again blamed me, and again seemed to retain that emotion. When I would see her, it would set her on edge. The "solution" to this was to not visit her for about two months as she was settling into the care home. Probably not what you want to hear, but if your mother seems to retain the memory of being upset with you after the conversations last week, even if she can't remember the actual incidents themselves, you may want to back off visiting for a while, or not visit by yourself, or have shorter visits, or something like that.

As far as the sundowning goes, I really don't have any great advice. Medication can help some people but not others. Any sort of soothing routine may help, or a favourite activity. On the other hand, it's possible none of these will help.

The only other advice I can give, about not triggering outbursts, is to be very careful about body language and tone of voice. My mother, who can "miss" quite a lot of what goes on around her, is incredibly sensitive to tone of voice and body language. When I am going to be with her, I have to sort of consciously detach and calm myself, to be in her presence. I get wrought up before and after, but can't show so much as a flicker of upset emotion in front of her, otherwise she sort of pounces on it if I'm the least bit flustered. I can't quite explain it, but I've heard others mention something similar. Again, easy to say, hard to do. (And not a little wearying to be 100% calm, cool, and collected all the time, especially when you're dealing with the delusions and upset and confabulations and looping non-stop.)

I hope others here will have advice for you as well. Best wishes to you and your family.

 

[BR_ANA]

Link to compassionate communication.

http://forum.alzheimers.org.uk/showpost.php?p=413710