Control v. support - so difficult

[Katrine]

No I'm not looking for advice on buying support tights or big knickers; I'm struggling with this whole dignity and respect thing. I feel horribly guilty to have had to take drastic action with regard to MIL's meds. I feel that we are experiencing a struggle for control - the more we feel the need to intervene the more MIL works at taking back control, which is causing it's own problems. Medicine was the one area of control she was hanging on to, having been a medical professional herself.

Lately we have been filling her week's pill packs for her but she doesn't know what day it is and is refilling the empty boxes so that we don't know what she has taken that day. She has turfed all her medicine packs out of the cupboard where she has always kept them, and filled this cupboard with mugs, pens, rubber bands etc. The medicines are scattered around the house - bedroom drawer, bathroom, by the phone, on tables etc.

I've therefore taken action to change MIL's meds to Dosette packs which will be ready in a week's time. We will then remove all other prescribed meds from the house. I have changed pharmacy, for various good reasons. Boots is very helpful and has made this a priority whereas her usual pharmacy has been messing me about for weeks and now say that we might have to wait a month to get the packs prepared - so not acceptable. Also their Dosette packs are laid out differently to her normal pill boxes and she will never be able to learn how to use them. We think she would just take all the pills out and put them in her own boxes, which may of course still happen! The GP surgery has been notified of the change of pharmacy and they should ring me if she goes in and asks for a prescription but that is really at the discretion of the receptionist so it might not happen. However, if MIL rings them or goes in to get more meds the prescription will go to Boots so MIL won't be able to get them from her regular and expected source.

My husband is her eldest son and I've asked him to go and talk to MIL about the Dosette packs tomorrow, without me. Carrot will be "it will remove the worry over getting it right". Stick will be that if she won't keep to the system a family member would have to go in daily to issue that day's meds. (not just us saying this, the GP agrees). Since that family member would usually be me, I will become the enemy and won't be able to provide the support on behalf of the family that she needs. So here we are building up to a conflict situation and I am dreading it. MIL has been getting crosser and crosser with me as the person 'interfering' with her meds and is complaining about me to other family members, which is a familiar pattern - "You know what Katrine's like; she has her own funny ways. I just let her get on with it and then do my own thing when she's gone". She also told me yesterday that she remembers what she chooses to do for herself but if anyone else tells her to do something then she blocks it out. No change there then, and an attitude that predates her dementia!

 

[Haylett]

I think this phase of the illness is actually one of the most difficult. My MIL was a pharmacist, pretty controlling and Always Right and our stand-off was refusing to let her drive - especially to collect the children from school. I'm very sorry that you are being made out to be Chief Villainess. The in between stage is alarmingly plausible sometimes and it can be difficult and hurtful when the accusations and paranoia are directed at those of us who are in the thick of it. I just hope any family and friends who are one step removed are supportive of you too and don't start muttering behind your back! Although you're not in the market for control pants or support tights, I'm afraid it's a case a la Bridget J, of putting on big girl panties and dealing with it!

 

[MissisT]

Oh dear. I feel very lucky that so far at least my OH is so easy to deal with although he's remarkably obstinate about not showering. Good luck

Teresa x

 

[cragmaid]

My Mum has been on the Dosette system for some time now, and we now have carers coming in twice a day, because Mum was getting mixed up with the days and sometimes not taking any pills at all.Her problems were compounded by the fact that Mum is blind so if she was dropping pills, then she could not see where they were. I have just had to write a note to the carers because once again they were late in coming to administer the pills and Mum went out, so we are now two days adrift this week. There is no easy answer, either I spend even more time trailing up and down the way to ensure the pills are delivered correctly or I trust the carers to get it right most of the time. Dammed if you do and dammed if you don't.Maureen.

 

[chucky]

This is just the start, you will be the villainess for a long time so grow yourself a thick skin, a sense of humour, the ability to do 20 things at the same time and youre on the right track. M and S do some super size control pants, buy one get one free, (joke) when all else fails smirnoff and ice usually goes down well! Joking apart youre in the right place, we all have someone in our lives who are suffering from dementia so we all know exactly how hard it is. The best advice i can give you is keep talking, dont bottle it up. You are doing well so far. Best wishes. xx

 

[Splat88]

Not sure what Dosette packs are, but since MIL doesn't even know what day it is, I don't think they would help. We had similar problems with the pill reminder boxes if that's what you mean, as she'd just randomly fill the boxes and didn't have a clue which day she was on.
Since she's been living with us its become a constant battle, put them on a plate, they disappear and I find them either in the bin or on the toilet floor. Stand over her and after we've gone through the arguments about her not being a child etc etc, she'll put them in her mouth and then spit them out later. Take your eyes off her for a second, and they get "wanged" across the room out of sight.
I had a word with her GP, who told me if she won't take them, I can't force her, and don't get so stressed about it. These are blood pressure tablets etc, as well as her Aricept.
My problem now is that I look after my young grandson, who has just started to crawl and I can't risk him picking them up and eating them.
As for personal hygiene, don't even go there!!! EXTREMELY large support pants please!!!

 

[chucky]

personal hygeine seems to be a sticking point for a lot of sufferers. Has anyone else seen this. A lot of the residents at his CH walk about with one trouser leg rolled up to the knee. My dad did it for a while too and i wasnt sure if they were just copying each other or if theres a reason for it. He sometimes walks about with NOTHING but his shoes on either. I did ask at the home but they said they didnt know.

 

[Katrine]

Dosette packs

Hi Splat88. You are having big problems with those pills! Fortunately MIL wants to take her pills, just is getting in a muddle with them. She currently uses a Pill Organiser - a plastic folder with individual pill boxes inside that are labelled for each day of the week and have internal compartments. Thus she, or someone else, can work through her prescripted medicine and lay it all out ready for the week. Then on each day she uses the medicines for that day, at the appropriate times. Well, that's the theory! It has worked well for many years but now suddenly MIL is not able to know which day it is and is also refilling the empty boxes from her supplies.

Dosette packs are also known as calendar blister packs. They are prepared by the pharmacy and provide a week's supply in a blister pack format. They are usually dispensed a month at a time, although my mother's pharmacy dispenses weekly because of limited storage facilities for prepared packs. Details of all the drugs are stuck to the inside cover of the Dosette folder by the pharmacy with printed sticky labels. Here's a link to what a Dosette pack looks like: http://www.ganfyd.org/index.php?title=Dosette_box

The patient presses the blister and extracts the relevant pills for the day and time of day. The patient cannot move the slots around or refill them (as MIL can at present) and there will be no spare supplies available in the house. A Dosette pack is intended to assist patients and their carers with complex drug regimes. These packs are often criticised by pharmacists as being of limited value as compliance devices, but we have to presume in our case an intention to comply, unlike in your situation.

The Dosette pack system would not stop MIL from emptying all the blisters, or starting one day and moving on to another, but it seems better than the current system we use which has now broken down. We cannot get Warfarin added to the Dosette pack because it is variable dosage. We will have to cut the strips of Warfarin tablets up and sticky tape pills in foil to each day's blister strip! What fun. I'll let you all know how we get on.

 

[Katrine]

Trouser leg

Chucky - on their way to a Freemasons meeting perhaps? Not sure whether that would involve nudity as well. I expect he's wearing his shoes because his feet are cold.

 

[Izzy]

Mum's is called a Venalink pack. It's really effective as the Carers prompt meds with it for her.

http://www.venalink.co.uk/weekly-pack-c30.html

 

[chucky]

Thanks katrine, that made me laugh. You need some humour i think when dealing with this monstrous disease. Keep smiling xx

 

[Splat88]

Thanks Katrine, not sure the Dosette packs would make a difference to MIL now that I have "control" of her meds, though they might be useful for me!!! She has 5 pills in the morning and 2 at night, and some of them are so small that with the arthritis in my fingers, I have trouble getting them out of the packets!!!

 

[cragmaid]

Splatt...Mine takes 7 in the morning, 1 at 2pm and one in the evening, Thank the Lord she has given up the sleeping pills for now, she was taking them at 6 pm and staying up as usual!! I spoke with the GP after the big mix up which happened at the back end of last year, resulting in a weeks pills left out of two weeks boxes!!. I have arranged that she takes the afternoon pill with her evening one and the GP said that she could last up to a week without taking her pills, before she became at risk, which took a bit of pressure off. It does now mean that there is only a week's supply in the house now and no spares so at least I don't have to worry about too much mix and match!! Talk to the GP and see if any of the pills can now be omitted, we are all at risk of taking the easy route when it comes to prescription renewals.
Katrine, I'll swap the control pants for the jumbo pile of post-it notes needed to keep her ( Mum's) habit of note keeping going!!!

 

[judyacave]

Hi Katrine

I had to take over giving mum her meds over two years ago as she was forgetting whether she had taken them and she was taking them again. She didn't like it but it had to be done. Now I see it as one of the easier things I have had to do. I still cannot get her to shower or bath. I am thinking of her going for respite as I think they may have more luck than me on that one. It is hard when you have a mum who has been very independant. Judy

 

[Splat88]

Hi Judy


Don't bank on it, MIL ended up in hospital for 10 days last year because of gall stone problems, and they couldn't get her to bath or shower, or take her pills half the time either!! I don't think anyone can make sufferer's with personal hygiene if they flat out refuse.
MIL has lived with us for getting on for 9 years, and I can count the times sh'e had a bath or shower on one hand. I just have to invest in incense, candles etc

 

[sunny]

Katrine,

Sorry to hear your woes with your MIL's medication but I feel from you are saying that the time has come for the medication to be given to your MIL (there is a time for independence and I know this is going to be hard on your MIL) but medication is so important and that it must be adhered to rigidly that if there is the slightest doubt she will do "her own thing" you have to take the reins. All medication should be kept in a locked cupboard and so she does not have access to the key.

Its really as simple as that whether your MIL likes it or not - there is no dignity or respect in taking the wrong medication and ending up in hospital very ill or even dead.

Your MIL will not understand what is happening to her and I know that you have tough times ahead and I really sympathise but do what you think is right and practical and in the best interests of your MIL and you know then that you have done your best no matter what the rest of the family think.

Probably your MIL will get such a mood on she may even refuse the medication when it is offered, but her son will be the one best to talk to her and tell her what is going to happen so he's the "bad guy" leaving you then to pop in and give the medication.

You know good cop bad cop! Its never easy a MIL/DIL situation at the best of times!

 

[Katrine]

Feeling the need to back off from confrontation

Thank you so much Sunny

there is no dignity or respect in taking the wrong medication and ending up in hospital very ill or even dead.

that is so helpful to me. MIL's daughter has a different perspective and is hoping to guide her mum with her meds using reason and logic, and constant reminders, whereas I feel that this approach has generally passed it's usefulness because of the level of memory loss. However, I am very glad that this week MIL's daughter took the typed medicine list that I had provided and got her mum to write out her medicine and dosages in her own handwriting to replace it. This helps her mum to feel in control.

My husband and I go round on a Saturday while MIL is out having lunch with her other son and do necessary things. My husband said to stop putting her medicines back in the cupboard where she has always kept them as she obviously doesn't want this. She has got them beside her bed now, and at least today they were all together in one box, not scattered throughout the house. She must feel the need to 'protect' her meds from me as the bedroom is the place where she hides things, including cash. So I just put a week's meds in her Pill Organiser and left the boxes of meds on the bedside table where I had found them.

Next weekend we will have the new Dosette pack and my husband will take it round and explain it to her. He has been very good in protecting me from criticism from another family member whose perspective is still that we just help MIL to maintain normality. I think there is no normality, just a 'semblance of normal' but if she was my own mother I might think differently. It is so hard to accept that the mother you have always known will never return to normal. I've been through this already with my own mum and am so relieved now that we have a way of living where my mother is safe and happy. With MIL we are entering the danger zone and can't see where we are going.

Thank you everyone for your support and advice. I have a 'try harder' personality, a need to solve problems and a strong sense of duty. It is therefore really hard for me to BACK OFF, and in the coming weeks I need to do that, making way for MIL's children to have discussions with each other and with their mum that involve me as supporter not manager.

 

[cragmaid]

I have a 'try harder' personality, a need to solve problems and a strong sense of duty. It is therefore really hard for me to BACK OFF,

I've come to the conclusion that this trait is very strong in carers. I know I suffer from it and because of it. You are absolutely right in saying there is no normal now, just what passes for it on a day to day basis, and the goal posts shift about 6 times a day. Actually, when I think of all my old school reports where " Maureen must try harder" was the prevailing comment, I do laugh. Keep posting Maureen.x.

 

[Katrine]

Must try harder!

Oh Maureen, how familiar that sounds! My school reports all said I must try harder. My parents would return from parents' evenings with my mother weeping and my father saying how disappointed they were in me. The message was that I was making my parents unhappy and that to gain their approval I MUST TRY HARDER. And I did. I got nine 'O' levels, three 'A' levels, secretarial qualifications, a degree, and post-graduate qualifications.

A few years ago my father told me it was such a dreadful pity that I had wasted my life as I was really quite intelligent. My mother told me that at least I had managed to be a good mother to three children. People outside my family think I have been a success in life, but if the people that matter most judge you as not being up to standard you can NEVER lose this sense of inadequacy. I'm not writing this to invoke sympathy, it is just a fact of life that if we've had that early conditioning we will constantly seek approval and validation.

I have now learned to reject some of those unrealistic judgements of my success in life, which one brother perpetuates now that his parents are no longer giving me the messages. My other brother thinks it is complete hogwash and gives me lots of love and validation. He lives in Australia and constantly tells people what a wonderful job I am doing looking after his mother and giving him peace of mind from so far away. It is lovely that I am helping him to feel that we are a team even though we only see each other once a year. He makes me laugh when he says our brother has never 'lived in the real world' when said brother had a very successful career in a major financial institution and was able to retire aged 52 because he was so wealthy. His employer's culture was an extension of boarding school, so not the real world as most of us know it. So he's a success, and I'm a success, but not in the same terms. He is incredibly brainy, I am nore emotionally intelligent, but why does it have to be a competition?

Must try harder? Must relax, chill, and reflect on all positive moments. In fact there is no must about my life. My 'successful' brother says I undertake all my caring duties because I want to, and I don't have to do it. Yes, he's right. I accept that. So I must want to do it for my own reasons not because of the expectations of others. Nobody is indispensible. If I was not there my two families would find different solutions to their elder care issues. Since I think I've now talked my self out of existence, I think I'll stop now!

 

[cragmaid]

Every family has it's pessimists, my OH and I will have been married 40 years this year, but there are still those alive today ( Mum being one) who would say " I told you it wouldn't last" if we should split up now.