Becoming my Mum's Carer...

[HillyBilly]

Thank you all so much for your kind words of support and advice. I really do appreciate it.

I'm just back from the CH in question - it is THE most wonderful place - all CHs should be like this one (and I've seen quite a few now!). I would unhesitatingly move in there myself! (The only one down point was the particular room that's available doesn't have the best view. However, they are expecting another vacancy to arise by Monday.) They advised me to take the weekend to think about it, which I will.

OH and I have talked it through and we have decided to persevere with caring for Mum at home a bit longer...our goal is to make it through Christmas. I know you'll all tell me I'm mad but I almost feel like I need to "be tested" a bit more before throwing in the towel. I know this isn't a competition but I do feel part of a "grumpy old carers' club" on here and I'm not quite ready to relinquish my membership By Monday of course we might be regretting our decision

 

[Georgina63]

Hi HillyBilly
I been catching up on the recent threads. I can only say do what you feel to be right at this point in time. My parents both have AD and until last month I was still in the grumpy old Carers club. Up until then I supported my parents living together (with lots of help) in their own home. To say it was a rocky road is an understatement, but I did this because I believed it to be the best option. Following a return from holiday when they were in respite care, it all became too much and the risks too high. They are now safe and settled in a CH nearby and I have moved into the 'somewhat relieved but slightly guilty club'! Until you move from one club to another, I salute you, I bet your Mum would be/is proud of you. All the best. Gx

 

[Amy in the US]

Hello HB and I am glad the care home have told you to take the weekend to think about your decision. That says to me that they want to work with you, to do what's best. It's also encouraging to read that the care home seems to meet your standards. If you don't choose to move your mother there now, I'd at least stay on their list!

At the end of the day, you have to make whatever decisions necessary, to be able to sleep at night and live with yourself, and we respect that. If that means you want to continue to carry on caring for your mother at your home for at least three more months, that's your decision, and that's fine, and we are here for you.

On another topic, I am another one who will suggest you use a bit of caution in how you approach Christmas/birthdays/other occasions. I spent a lot of time last year, the first year for Thanksgiving and Christmas for my mother in the care home, agonizing over what we should do. I refused to leave town or be with other family on those days (and of course now I wish I'd gone to my in-laws' house for at least one of the holidays, as my father-in-law died this summer) because I felt I had to spend as much time as possible with my mother. Right?

Well, I should have remembered that pre-dementia my mother never cared much for Thanksgiving and taking her out for a holiday dinner was okay, but then we overstayed our visit with her at the care home and she got confused. She couldn't remember that it was Thanksgiving and we didn't recognise her hints for us to leave. I can't remember what my husband and I did for the rest of the day, and then we went out of town to celebrate a belated Thanksgiving with some of my family, and I can't remember any of that except I didn't enjoy myself (I literally cannot recall anything about it, not one thing).

Christmas Day we again took her out to eat, which was okay, but we tried to do present opening and a Christmas stocking like we'd done in the past, in her room at the care home, and she was agitated and upset by this, and frankly confused by the stocking. In retrospect, she had little awareness that it was Christmas, and likely only because someone at the care home decorates in a major way so there's a tree or a wreath or fairy lights at every turn. Some of her agitation was a fixation that she didn't have gifts for us (we had brought items that she had "bought" for us, but her short term memory is terrible and she couldn't grasp the concept) and she didn't understand why we weren't at the house of a cousin (who is elderly and poorly, lives far away, and hasn't had us for Christmas in years). She also didn't like any of her gifts, or didn't understand them, or both-except for the sweets. Later that evening my husband and I had a meal at an Indian restaurant with some very good friends and a lot of their friends or acquaintances who were at loose ends, and it was convivial, but again, I wasn't able to enjoy it.

So I'd be very careful about managing your expectations, is what I'm saying in a very long-winded way.

Whatever you do, watch out for that Guilt Monster! When I come to help you scrub floors (and walls and whatever), I shall give it a poke in the eye with a stick if you haven't done so first.

And no matter whether your Mum is at home with you, or in a care home, you will still be a carer, you will still be important, you will still be her advocate, and you will still be very much welcome here with the rest of us grumps. And please keep us posted/do let us know how you get on.

 

[HillyBilly]

Whatever you do, watch out for that Guilt Monster! When I come to help you scrub floors (and walls and whatever), I shall give it a poke in the eye with a stick if you haven't done so first.

LOL - thank you Amy! Do you know though - the CH is so very nice that I'm not even sure that I would be entertaining the Guilt Monster (famous last words!).

And I loved your Thanksgiving/Christmas cautionary tales. If Mother plays up at Christmas we shall stuff her and have her with roast potatoes

 

[LadyA]

Had to do a search for it, but here (hopefully) is the post with links to info for people living in Ireland: https://forum.alzheimers.org.uk/sho...-Ireland&highlight=Information+people+Ireland

 

[HillyBilly]

Thanks LadyA x

 

[LadyA]

I hesitate to say anything about your decision. It was the hardest decision I ever had to make, moving William to full time care. But it got to where it was necessary, for both his safety and my own. He had attacked me physically twice, and tried to strangle me. He had also got his hands around the care assistant's neck (who thankfully, was an enormous body-builder type! - from the other room, I heard his calm voice saying "Now William. You need to let go." ) William was losing weight rapidly & becoming dehydrated because he wouldn't eat or drink enough, and was only getting his meds sporadically. Once he settled in the nursing home, he improved greatly - he loved the carers (male) available to help him, loved the "restaurant" meals, the wide, flat corridors that were safe to walk - and a uniformed nurse doling out his meds meant he took them without a problem.
All that meant that he regained a good quality of life, and so did I. And, better yet, our relationship also regained a quality that it had lost in the "final battle" of trying to care for him here, when everything was such a struggle. He never went to a Day Centre so it was full on, with him sleeping between 1 1/2 to 2 hours at a time through the 24 hours.

Best wishes to you as you think about things. xx

 

[HillyBilly]

I hear you LadyA. I think it must be so very much harder when it's your partner. No, I KNOW it must be harder. You were very strong x

All calm so far this weekend (apart from more of the D word ).

OH got up first this morning and made Mum her cuppa. I could hear her chattering away to him and had to laugh when she came out with, "So who else lives here, apart from you and Mongo?" (Mongo's the dog and wasn't even in sight!).
OH said, "Well, H lives here too...".
Mum replied in a surprised voice, "What, MY H????".
Nice to be at the bottom of the pile...

 

[LadyA]

On the other hand, how nice that she knew who he was referring to!

 

[HillyBilly]

Snooker???????????

On the other hand, how nice that she knew who he was referring to!

So very true.

Mum cracked us up twice last night. OH went for a shower and came back through the snug, wearing only a towel around his lower half and made his usual comment, "HALF NAKED MAN COMING THROUGH!". Mum laughed as usual but this time added: "Next time wear a bra!"

Later, over dinner, OH was telling Mum that he's a World Champion (which he is - and this was always a joke before Mum landed that he'd be able to tell her this fact over and over and over and over ). Usually she asks "At what?" And then he tells her, at motorbike racing. But last night she said, "At snooker?"
***???? We cried with laughter.

Nasty tantrum over clothing again this morning - sent Mum to her room! Hour later and she's out snoozing in the armchair by the fire....

 

[LadyA]

Little golden moments - and they don't make your decision any easier, do they?

 

[HillyBilly]

This morning Mum was complaining of abdominal pain and was on the toilet for half an hour, straining to go she said. So maybe this diarrhoea problem IS down to constipation...took Mum to day care and advised them of the situation. They suggested getting some lactulose solution from the pharmacy, which I did on the way home. I'm a bit scared to administer it TBH!

 

[Shedrech]

Hi HillyBilly
please do whatever you can to solve the constipation - dad ended up in hospital as I just hadn't realised that he was well and truly blocked up and what was coming out was overflow; it knocked him for six - after that he had the lactulose each day, lots of fibre in his food eg porridge for breakfast, fruit every day, the occasional senna tablets when I was concerned he hadn't been for a couple of days, plenty of liquid .... and fewer stodgy cakes etc
the lactulose doesn't cause a tidal wave, just loosens things so it's easier to go and apparently just tastes sweet so isn't unpleasant
and do keep the GP informed and involved

PS did you put your mum's name down for the care home you visited - you may want to have your mum at home with you at the moment, but it may be a useful prompt to have the home phone you when there is a vacancy so that you can reassess at that time

 

[LadyA]

Lactulose (Laxose) is a stool softener, takes several days to work. It's really gentle.

 

[HillyBilly]

the lactulose doesn't cause a tidal wave, just loosens things so it's easier to go and apparently just tastes sweet so isn't unpleasant
and do keep the GP informed and involved

PS did you put your mum's name down for the care home you visited - you may want to have your mum at home with you at the moment, but it may be a useful prompt to have the home phone you when there is a vacancy so that you can reassess at that time

Thanks for the reassurance!

Yes, Mum's name's on the waiting list already - was told she was number 7 on the list but then a vacancy arose and when they rang round nos 1-6 they'd all gone elsewhere, hence I got the call to offer her the place last week! Reminds me - I need to call them to say no at this moment in time but ask to KEEP US ON THE LIST PLEASE!!!!!

 

[Tin]

We turn to Lactulose when mum has not had a bowel movement for a day or two, it is gentle and mum only needs to take 5ml to get things going, for her it takes affect within 9 hours so I try to give very early in the day assuring that when it works, she is still up and about - not when sleeping in bed - o no not then!

 

[Amy in the US]

While I haven't personal experience with the overflow diarrhea from chronic constipation, I have certainly heard enough stories here on TP to know it's not uncommon with PWDs. In fact, I think I might have first heard about it here on TP, or in one of my carers' groups.

At any rate, I'd definitely enlist help from the GP and/or the district nurse (can't recall your local term--community nurse?) as this may be the source of the mystery diarrhea, which I'm sure you would ALL be well pleased to get cleared up.

Please say hello to your DH, the Snooker Champion, for us! (And tell him we'll buy him a bra.)

 

[HillyBilly]

We turn to Lactulose when mum has not had a bowel movement for a day or two, it is gentle and mum only needs to take 5ml to get things going, for her it takes affect within 9 hours so I try to give very early in the day assuring that when it works, she is still up and about - not when sleeping in bed - o no not then!

Thank you for that very important tip!!!!

 

[HillyBilly]

Please say hello to your DH, the Snooker Champion, for us! (And tell him we'll buy him a bra.)

 

[HillyBilly]

I'm convinced that what we have here is overflow diarrhoea.
Suffice it to say that I've been up with Mum since about 6am, cleaning up both her and the bathroom floor. Thank god that it was confined to the bathroom this time.
I administered 30ml of lactulose at 7am...