I think she just suffers from Irritable Syndrome 
Not heard of Colpermin capsules - will check them out - thanks
Not heard of Colpermin capsules - will check them out - thanks
Becoming my Mum's Carer...
- Thread starter HillyBilly
- Start date
Mum was OK first thing this morning, got her up, tea and plain toast.
I had to go out for an hour, left Mum her clothes laid out on her bed (all in the right order for putting on) and OH in charge
Got back.
OH - "You'd better see to your Mother".
Me - "What happened?"
OH - "She wanted a bath, I suggested a wash down at the sink. She got in a paddy about the necklace she's still wearing from yesterday. I took the necklace off for her. She came out of the bathroom and sat in her armchair. She said she was cold. I suggested she got dressed. She accused me of nagging her. I made her tea and wrapped her in a blanket. Now she's back in the bathroom."
Me - "Welcome to my world!"
Mum was in and out of a state of undress for 4 hours. Rejected clothes everywhere. I'd booked an optician's appointment for her for 2.45pm so in the end I practically forced her to get dressed and in the car.
Optician revealed that Mum not only has cataracts in both eyes (one really bad) but also high pressure in both eyes, probably glaucoma. Great. Two year waiting list for both. Or she goes private. Have initially asked for a private referral to an eye specialist re the possible glaucoma issue. And two pairs of prescription specs on order. Now seemingly happy...until...
Tantrum when we got back as she got stuck in her skinny jeans (trying to change her fixation pants) and set off into the garden to "get away from here".
"You're wearing your slippers, Mum".
Mum - "Don't care".
She got to the bottom of the ramp, realised she was wearing her slippers and turned back for home and lunch
I had to go out for an hour, left Mum her clothes laid out on her bed (all in the right order for putting on) and OH in charge
Got back.
OH - "You'd better see to your Mother".
Me - "What happened?"
OH - "She wanted a bath, I suggested a wash down at the sink. She got in a paddy about the necklace she's still wearing from yesterday. I took the necklace off for her. She came out of the bathroom and sat in her armchair. She said she was cold. I suggested she got dressed. She accused me of nagging her. I made her tea and wrapped her in a blanket. Now she's back in the bathroom."
Me - "Welcome to my world!"
Mum was in and out of a state of undress for 4 hours. Rejected clothes everywhere. I'd booked an optician's appointment for her for 2.45pm so in the end I practically forced her to get dressed and in the car.
Optician revealed that Mum not only has cataracts in both eyes (one really bad) but also high pressure in both eyes, probably glaucoma. Great. Two year waiting list for both. Or she goes private. Have initially asked for a private referral to an eye specialist re the possible glaucoma issue. And two pairs of prescription specs on order. Now seemingly happy...until...
Tantrum when we got back as she got stuck in her skinny jeans (trying to change her fixation pants) and set off into the garden to "get away from here".
"You're wearing your slippers, Mum".
Mum - "Don't care".
She got to the bottom of the ramp, realised she was wearing her slippers and turned back for home and lunch
Snuck yet another pair of jeans (thanks ebay) into Mum's wardrobe and she seems to have taken to them. Right length and everything. Need to find more
Mum was at day care all day and was "up and down" in mood so much (like yesterday) that they tested her urine. No UTI. So "up and down" is the new normal. Fantastic
Mum was at day care all day and was "up and down" in mood so much (like yesterday) that they tested her urine. No UTI. So "up and down" is the new normal. Fantastic
Well now I have a quandary.
My preferred CH told me there was a waiting list of 7 when I put Mum on it about 3 weeks ago.
Last week I heard that a resident had died (90!) and I'm ashamed to say that my first thought was "That's Mum up to number 6 on the waiting list." (Was that bad???!!!!!).
I figured that a place might become available maybe early next year.
They called me this morning to offer Mum the vacancy! I guess the others have turned down their offers, for whatever reasons.
What to do?????????????????
My preferred CH told me there was a waiting list of 7 when I put Mum on it about 3 weeks ago.
Last week I heard that a resident had died (90!) and I'm ashamed to say that my first thought was "That's Mum up to number 6 on the waiting list." (Was that bad???!!!!!).
I figured that a place might become available maybe early next year.
They called me this morning to offer Mum the vacancy! I guess the others have turned down their offers, for whatever reasons.
What to do?????????????????
If it were me I'd take their hand off! Go for it! Your relationship, your time, your hobbies, your life are important too, and you don't get paid for **** shovelling and being stressed 24/7. Care staff are trained and paid to do it, and have chosen this career. You had it lumped on your shoulders. Grab it and don't feel guilty, you're worth it! Xxxxxc
I have to confess I'd be going for it! Your mum doesn't sound particularly happy living with you although I'm sure its the dementia and you couldn't do anything more. You don't sound happy, and I don't suppose that your OH is all that thrilled with the way things are. She hasn't really settled yet, so would it be better for her to move now, rather than waiting until she is more settled and then moving her? If you don't think it's going to work long term, is there anything to be gained by delaying now?
I'm probably going to be in the same position very soon myself - mum was put on list at home nearly a year ago, I think she was No. 8 then. Now No. 2. If No. 1 doesn't take it, it will be ours (well, mum's!) In a way it's great she's now No. 2 but I'm also dreading the call as I know this is going to be one of the hardest decisions I've ever had to make in my life (and probably the hardest).
I'll be very interested to hear what you plan to do. In some ways your mum sounds less 'advanced' than mine in that you are able to take her to day care and you still seem to be able to have reasonable conversations with her. Mine doesn't even know who she is any more and needs constant attention but at least sleeps most of the night (at the moment!).
I wish you strength in making your decision ....
I'll be very interested to hear what you plan to do. In some ways your mum sounds less 'advanced' than mine in that you are able to take her to day care and you still seem to be able to have reasonable conversations with her. Mine doesn't even know who she is any more and needs constant attention but at least sleeps most of the night (at the moment!).
I wish you strength in making your decision ....
HB, it's hard to get those phone calls you're not expecting, and you weren't expecting a place to come vacant at this care home so soon. So I imagine some of your reaction is shock/feeling startled.
I would also guess that while they want an answer ASAP, and you may feel pressured, that they will give you at least a day to think it over. So I would go for a walk, think it over, and have a long talk with your OH.
I also wonder if it would be helpful for you to visit the care home again, talk to the manager or charge nurse/nurse manager, that sort of thing.
If you do not decide to place her in the care home, I hope you will please leave her on the list.
No matter what you decide, your mother will be well looked after, either by you or the new care home. I am guessing the preferred CH is at least reasonably close to you?
You are already dealing with difficult behaviour, incontinence, and all the thankless tasks that go along with that. I don't know what your line in the sand is, but caring for your mother at home will only get harder, not easier, and that's something to keep in mind. I can tell you what I would do (I would never have cared for my mother at home), and what I would tell you to do (go for it!), but I can't tell you what the right decision is for you right now. Even harder is knowing what is the right decision, for your mother.
As you may know from Ann's thread, my mother is having to move (within her care home) to a higher level of care soon (dementia care/memory care), and I'm dreading it. However, she has had a very good 18 months in her current place in the care home (assisted living, for those in the States). In fact, she settled faster and better than I ever imagined she could and has received very good care. Certainly she is hugely better off, than when she lived alone at home, both physically and psychologically. But these decisions are hard and upsetting and it's very difficult, maybe impossible, to know what to do.
Clearly you and your partner are providing very good care for your mother, we are not saying you aren't. If and when she goes into a local care home, you will continue to be providing care (it's still a lot of work, just less hands-on) and seeing that she receives appropriate care. Whatever your decision is, we will support you, and remind you that you are being the best carer you can be.
I know it's hard, and I'm sorry. Hope you can find a way forward.
I would also guess that while they want an answer ASAP, and you may feel pressured, that they will give you at least a day to think it over. So I would go for a walk, think it over, and have a long talk with your OH.
I also wonder if it would be helpful for you to visit the care home again, talk to the manager or charge nurse/nurse manager, that sort of thing.
If you do not decide to place her in the care home, I hope you will please leave her on the list.
No matter what you decide, your mother will be well looked after, either by you or the new care home. I am guessing the preferred CH is at least reasonably close to you?
You are already dealing with difficult behaviour, incontinence, and all the thankless tasks that go along with that. I don't know what your line in the sand is, but caring for your mother at home will only get harder, not easier, and that's something to keep in mind. I can tell you what I would do (I would never have cared for my mother at home), and what I would tell you to do (go for it!), but I can't tell you what the right decision is for you right now. Even harder is knowing what is the right decision, for your mother.
As you may know from Ann's thread, my mother is having to move (within her care home) to a higher level of care soon (dementia care/memory care), and I'm dreading it. However, she has had a very good 18 months in her current place in the care home (assisted living, for those in the States). In fact, she settled faster and better than I ever imagined she could and has received very good care. Certainly she is hugely better off, than when she lived alone at home, both physically and psychologically. But these decisions are hard and upsetting and it's very difficult, maybe impossible, to know what to do.
Clearly you and your partner are providing very good care for your mother, we are not saying you aren't. If and when she goes into a local care home, you will continue to be providing care (it's still a lot of work, just less hands-on) and seeing that she receives appropriate care. Whatever your decision is, we will support you, and remind you that you are being the best carer you can be.
I know it's hard, and I'm sorry. Hope you can find a way forward.
HB, not being nosy, but if your mum goes into a care home, will you be applying under the Nursing Home Support Scheme for her (the "Fair Deal")? That takes quite a while to process, and the person isn't supposed to go into care until it's all approved, etc. (unless you can pay the full whack yourself). Somewhere in the bowels of TP I have posted a link to "Info for people in Ireland" - but I can't remember where.
I DON'T KNOW! She would be self funding for 2-3 years...until she reaches the threshold...
Today I'm like one minute "Take the CH place" and the next "No, we can cope for a wee while longer..."
After I've dropped Mum off at Day Care tomorrow I'm going to go to the CH to talk to the manager...OH says "It's totally up to you"...
Mum's had a "good" day today...it's her 80th birthday in a couple of weeks...I will feel bad if I can't at least make that...I feel such a failure-in-waiting...
Today I'm like one minute "Take the CH place" and the next "No, we can cope for a wee while longer..."
After I've dropped Mum off at Day Care tomorrow I'm going to go to the CH to talk to the manager...OH says "It's totally up to you"...
Mum's had a "good" day today...it's her 80th birthday in a couple of weeks...I will feel bad if I can't at least make that...I feel such a failure-in-waiting...
You're not a failure in any way, shape or form! You're doing a fantastic job in a really difficult situation. No one ever thinks they will become a carer in this way. This horrible illness defeats the strongest people by taking them into a different dimension. It leaves them like mist people, not properly in the world or of the world, but in a different room from us. Strangers with no knowledge of themselves or the people who love them. Be kind to yourself, you are amazing. Xxxxx
HB - how about signing up for a few weeks (I think all care homes do a 'trial period'?) and using it as respite for yourselves, see how it goes and then make a decision (either she stays or you bring her home again). I'm not altogether sure if that's a brilliant idea or not, but it's one I'm considering for my mum when her place at my preferred care home comes up.
It is such a very hard decision. I'm not sure I'll ever be able to face it myself.
It is such a very hard decision. I'm not sure I'll ever be able to face it myself.
I'm a bit harsh about birthdays and anniversaries - in the end, it's only a day so to me, I wouldn't be too fussed about whether she was at home or in a care home on that date - she might have a lovely day with you visiting her in the home or a terrible one home with you, or the other way round, it's not really in your control. Still, it's all likely to take a few weeks to sort out, even if you say yes today, so it might not be a deciding factor in the end.
It's a tough decision, I hope that when you do make your decision whichever one it is, you feel that sense of relief knowing it's the right way forward for you and your mum.
It's a tough decision, I hope that when you do make your decision whichever one it is, you feel that sense of relief knowing it's the right way forward for you and your mum.
you posted elsewhere of the toll this has taken on you already, I know you worked hard to get your mum here, but even in a CH she is near you and you can care for her far better than you could from a distance.
The fact that you put her down for the CH indicates that you were struggling, it may be better for both of you that she is in a CH and you visit regularly, would your pre dementia mum have wanted you to put your life on hold? Can you cope if you and OH are getting no sleep?
I'm in the camp I could never have coped in the first place - and I do admire you - but think about how long you can go on.
I do agree with Arielsmelody on the birthday issue. You may have a better day if she is in the CH, and she may not be able to cope with a big fuss anyway.
The fact that you put her down for the CH indicates that you were struggling, it may be better for both of you that she is in a CH and you visit regularly, would your pre dementia mum have wanted you to put your life on hold? Can you cope if you and OH are getting no sleep?
I'm in the camp I could never have coped in the first place - and I do admire you - but think about how long you can go on.
I do agree with Arielsmelody on the birthday issue. You may have a better day if she is in the CH, and she may not be able to cope with a big fuss anyway.
Hi Hillybilly - like the others I understand your quandary; I've been following your thread. My mum has been living with us for 5 years, diagnosed a year ago but clearly the illness had been affecting her before that. I don't (yet) have the continence issues but if I did, those coupled with the behaviour, sleep disturbance and the impact on day-to-day life would be enough to push me into the go for it camp. The idea of signing up for a few weeks is a possibility but I've read lots of threads where it takes a lot of time to settle in though it would give you the chance to see how good the care was, how your mum was looked after etc - and see the change for you. But I agree with the majority here - I know only too well the impact on me and my OH of having my mother with us and it's not good. I am increasingly stressed and it's getting much harder to cope and I know we're on the foothlls. So I'd go for it. All the best. Sue
I agree with Hilly-Billy about the above. Wise words -- in fact, some of the wisest I've read on TP!
And the same goes for Christmas.......
I would just like to add to others' comments, Hilly-Billy.
You did the right thing moving your Mum to Ireland, but I think you would agree that you had no idea of how demanding it was going to be having her live with you. As I have said previously, it is often thought that bringing someone with dementia into a loving family environment will somehow stabilise or even improve their symptoms but this doesn't happen, sadly.
Your Mum's dementia will get worse, and probably her care will become more demanding.
Your obvious love for her can be used to her advantage in a care home too, as others have said.
And it may be better for her to move sooner, rather than later on.
Tough times, hard decisions, and only you can make them, but do not feel guilty, please, it is not warranted at all.
You did the right thing moving your Mum to Ireland, but I think you would agree that you had no idea of how demanding it was going to be having her live with you. As I have said previously, it is often thought that bringing someone with dementia into a loving family environment will somehow stabilise or even improve their symptoms but this doesn't happen, sadly.
Your Mum's dementia will get worse, and probably her care will become more demanding.
Your obvious love for her can be used to her advantage in a care home too, as others have said.
And it may be better for her to move sooner, rather than later on.
Tough times, hard decisions, and only you can make them, but do not feel guilty, please, it is not warranted at all.
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