Teabags Again

[alfjess]

Hi All

I have had a hard day. Mum and Dad have been up and down the path every 10 mins, since 1.00 pm to-day.

I took them for a run out in the car then dropped them at their own house, next door. It worked for approx 1 hour, then they were back again.

It is Mum, she has to have company and Dad just does as Mum tells him.

Dad was wearing Mum's jacket (as he often does) I think Mum tells him "put that on" but he had taken all of the white buttons off and they were in the pocket.
After giving them dinner, meds etc, I took them next door, where they live, to try to bed them down, but with the light nights things are becoming difficult.

It is bin night and my husband took the rubbish out, MAJOR TRAUMA. Mum freaked, said they had nothing left in the house and we were stealing it. The rubbish I tried explaining it in the venacular "the midden men are coming" It didn't work!

After getting around that, I noticed teabags in the fruit bowl. When I put them back in the tea cannister, Mum had another hissie fit, "She had just MADE DINNER Grabbed my arm and said, "You b----- listen to me, I --

I am sorry to say I lost it. I told her "I am not listening to you, I am trying to do my best and I am I going home. Goodnight, I will see you tomorrow" I walked out the door.

Now I am feeling such a failure and guitly, I know she is confused and she is still trying to "manage"

A lot of things recently have made me wonder if I am doing the right thing for both Mum and Dad. Would they be better of in 24 /7 care.

I can't give them the constant attention, company, that Mum appears to need.

Or am I looking for excuses??

Alfjess

 

[jenniferpa]

Oh dear, your mother and the tea bags again. I'm right in thinking she believes them to be an appropriate sandwich filling?

Dear Alfjess, try not to beat youself up over it. You walked away because you couldn't take it any more, and that's sometimes the only thing you can do. I don't know whether they need 24/7 care: it sounds like it but even if strictly speaking they don't, can you continue on in this way? You're caring for not one but TWO parents with AD - it's hard to imagine anything more difficult. Do you not deserve to have a life as well? That's not being selfish, that's being realistic.

Love

Jennifer

 

[DeborahBlythe]

Hi All
Or am I looking for excuses??

Alfjess

I don't think you are looking for excuses, Alfjess. I really don't. I have 'snapped' back with my mum once or twice with far less provocation and she is in care anyway!

I can't see how you can manage to keep an eye on the pair of them without more support. It would drive a saint nuts. It may be possible for them to continue living as they are; that is supposed to be a real care option these days, but they need a package of home care which allows you the chance to live your own life too. If you don't make your needs known, they can't be taken into account. You have a right to a Carer's assessment as I'm sure you will already know. If not, check out the fact sheets on the AS main site, especially this one: http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Coping_with_caring/info_yourself.htm

Kind regards, Deborah

 

[alfjess]

Hi Jennifer

Thanks for your reply.

Yes Mum does think teabags are a sandwich filler -- also currency. I buy them approx 3 x 180 paks per week. Most end up in the bin, hence I now only buy the cheapest I can find.

I know it is only me who can make the decision for 24/7 care, but what a hard decision it is.

My problem, as you know, I have two, while I know it is definately passed the time when Mum should be in care, Dad is no problem and would probably be even less of a problem if it wasn't for Mum, nagging and ridiculing him.

After 60++ years of marriage, I can't think of separating them, so that is my problem.

Do I put them both in care? Separate them, ie Mum in care, Dad at home with me?
I know that even if both are in care, it could come about that they will be separated anyway, but I can only hope that when that time comes, they hopefully won't know any different.

If I am truthful, I have my head in the sand hoping something happens, where I don't have to make a decision.

I am not normally so cowardly.

Thanks
Alfjess

 

[alfjess]

Hi Deborah

Mum and Dad have a carer coming in the morning and Mum is supposed to go to daycare 3 times a week, Dad twice.

Dad doesn't like daycare and doesn't often go.
Mum goes, but the staff at daycare have difficulty keeping her there.

My Daughter lives next door and at weekends, when not working does lunch and dinner once a week.

My cousin comes daycare mornings to help dress them.

My husband has taken early retirement to help out, not only with my parents, but his own Mother has mixed dementia. Fortunately after about a year MIL has now gone to stay with my brother-in-law, so other than clearing her house and selling it, that situation has eased and hubby is a great help in dealing with Mum.

So things are not as bad as you would imagine.

I just wonder if, Mum and Dad would be happier in a care home. I know I am becoming very impatient with Mum

Thanks
Alfjess

 

[jan.]

Dear Alfjess,

Oh you poor thing......having to cope with both your parents on your own must be SO hard for you.........even if your parents are in the early stages it can seem as though it`s the hardest part (in some respects) of this illness.

As you seem to be having more problems with your mum at the moment, would you consider sending her for respite for a week or so, so it gives you a rest (and
it sounds as though you could do with some) and you can monitor how your dad
reacts with just you for company?

Please don`t feel guilty about "losing it"......we are all only human after all, and none of us has unlimited reserves of patience. I have been very short with my dad at times, especially when i think he`s playing games with me. Sometimes it`s very hard to convince yourself that it`s the " illness" that makes them so "naughty".

Thinking of you and sending {{{{{{{{{BIG HUGS}}}}}}}}}

Love Jan. X

 

[Margarita]

I know I am becoming very impatient with Mum

My mother live with me and I can lose my temper with her ,
She did not like the dinner I gave her, so had a shouting fit hand in the air ready to get hold of me, so I told her (shouted back ) to stop it and walk away, so you did the right thing


As long as they are not in danger to themselves when left alone, your then know its the right time for care home . , sounds like you’ve tried of it at the moment so are finding it more stressful, even with all the help they are getting as you explain above , it can still be very stress full for you .

I cared for both my mother, and my brother who has a menial illness together at home with me.

 

[Taffy]

Hi All

I have had a hard day. Mum and Dad have been up and down the path every 10 mins, since 1.00 pm to-day.

I took them for a run out in the car then dropped them at their own house, next door. It worked for approx 1 hour, then they were back again.

It is Mum, she has to have company and Dad just does as Mum tells him.

Dad was wearing Mum's jacket (as he often does) I think Mum tells him "put that on" but he had taken all of the white buttons off and they were in the pocket.
After giving them dinner, meds etc, I took them next door, where they live, to try to bed them down, but with the light nights things are becoming difficult.

It is bin night and my husband took the rubbish out, MAJOR TRAUMA. Mum freaked, said they had nothing left in the house and we were stealing it. The rubbish I tried explaining it in the venacular "the midden men are coming" It didn't work!

After getting around that, I noticed teabags in the fruit bowl. When I put them back in the tea cannister, Mum had another hissie fit, "She had just MADE DINNER Grabbed my arm and said, "You b----- listen to me, I --

I am sorry to say I lost it. I told her "I am not listening to you, I am trying to do my best and I am I going home. Goodnight, I will see you tomorrow" I walked out the door.

Now I am feeling such a failure and guitly, I know she is confused and she is still trying to "manage"

A lot of things recently have made me wonder if I am doing the right thing for both Mum and Dad. Would they be better of in 24 /7 care.

I can't give them the constant attention, company, that Mum appears to need.

Or am I looking for excuses??

Alfjess

I totally understand what you are saying,I too, am in a similar situation as your own. My mum was diagnosed over seven years ago with this miserable disease and dad who doesn't have dementia, is in very poor health. Mum is now in the beginning of the last stages of dementia. Mum, like your mum was very irrational and I, like you on occassions snapped back. At this point of mum's disease she is much easier to manage as she is less aware of her being. This journey is a roller coaster of emotions, everyday can bring changes maybe that's why it is said dementia is tidal (with a tsunami thrown in. lol ) Don't fret on decisions about placements you'll know when the time is right. I lack the courage to make that decision but ultimately it will be made for me.

 

[alfjess]

Hi All

Thanks for all your replies and support.

I am feeling a bit better to-day, weekends can be stressful, there is no daycare and Mum just wants to be in my house all day and I have to sit and listen to her, if I don't she accuses me of not wanting them, wanting rid of them etc. I can understand, they must be so bored, they cannot now read or watch television and I suppose the only thing Mum CAN do is talk, well, after a fashion

I would guess that both Mum and Dad are late stage 5 going into stage 6.

I have 8 weeks per year respite, but they both go and I think if I sperated them they would both be very anxious

The CPN, social workers daycare staff all think they should be in permanent care, it is just me having the courage to do it

Thanks again

Alfjess

 

[Grannie G]

Dear Alfjess, why don`t you consider permanent care. I understand what a traumatic decision it would be, but how much longer can you continue like this.

I`m having a difficult enough time with just my husband. He reads the paper, of a fashion, watches TV and will listen to music, but he still needs occupying, gets very depressed and angry, and that`s just one. How you cope with two, I just don`t know.

How are they when in respite? How are they when they come home from respite?
If you try to be as objective as possible, and I know that`s hard, as they are your parents, are they any happier in their own home than they are in respite.

This is how I`m beginning to feel about my husband. I`m bending over backwards, trying to make everything better for him, yet he`s still so unhappy. And I`m beginning to ask myself would he be any more unhappy in a home.

 

[mel]

Hi Alfjess
please don't beat yourself up about this.....you are doing a remarkable job in the fact you are giving your parents independence ....with you being there for them too
Just want to send you a huge hug
xxxxxxxx

 

[alex]

Hi Alfjess

It must be soooo hard and very stressful for you looking after both parents, i admire your strength of character for having the courage to do it, most would find it too much.

I think that when you feel your parents are no longer safe in the enviroment they are in, then you will also find the courage to place them in care where they will be safe.................................i think you'll know deep down when the time is right for them and you.

Best wishes for the future
Love Alex x

 

[hawaii50]

Hi Alfjess

How I feel for you with both parents. I think we all loose it at times - it's very hard not to. I see you live in South Lanarkshire - so do I. Have you thought about a care home for both of them? I have been looking for my mum at the moment as she has all the signs of stage 6 of AD and there is a really nice place in Stonehouse called * overlooks the park and fields - they have lots of double rooms there so they may be able to stay together. It is recognised by NHS and is £500 per week - depending on what their assets are will depend on what they pay. Some of the rooms are being refurbed at the moment but it is one of the better places I have checked out. * in Lesmahagow is the rolls royce and is beautiful but costs a lot more - unless your parents have no assets in which case I know the NHS pick up the costs there as well.
Hang on in there - every day is a new day to try again!!!

 

[blue sea]

Don't feel guilty if you do decide the care route is best for all of you. Unfortunately, as this illness is progressive, the problems you are facing are bound to get worse so it might be a case of not if but when is the right time. It sounds as if you are there, or close to it. The 'professionals' certainly do not always know best (far from it) but their judgement is another factor which relieves you of the enormity of the whole decision. Both my father and my aunt had dementia which progressed to needing 24 hour and I was amazed how quickly they adjusted (not without some problems, of course, but then there were even worse problems when they were not in care). There is no easy answer, i'm afraid. However you will not be letting them down if you do decide on care options, you will be keeping them safe and probably will be able to enjoy a better quality of relationship with them in their remaining time. I certainly found this was the case.

Blue sea

 

[alfjess]

Hi All

Last time they were in respite I went to bring them home.

Mum was confused and saying she wasn't going home. The manager asked Mum if she wanted to stay there. As usual there was no sensible answer. I asked Dad, " would you like to stay here" His answer "yes it's alright" Out of the mouths of the suffers????

I am slowly being convinced with every incident that I cannot provide the entertainment and stimulation, that Mum demands and probably Dad needs, although I can provide for their practical needs, as in feeding, washing, cleaning and saftety etc. I just cannot be available 16 hours a day.

Hawaii 50

I think what you say is the rolls royce of care homes in Lesmahagow is where they have been for respite and if they go to permanent care, this is where they are probably going. The only thing is that when family have visited, there doesn't appear to be a lot of organised activities. I would like to look at other care homes.

I did private message you, asking for the name and location of the care home you had found for your mother. I now know the location, which would be fine. could you tell me the name?

Thanks again everyone, I think I will have to find the courage. I am probably deluding myself that things will calm down and get back into routine, but it only works for a short time, then Mum, being Mum finds something new (sliced soap on bread, for Dad's dinner ) and throws another spanner in the works

You are all helping me to reach a decision and to be strong

Alfjess

 

[hawaii50]

Hi Alfjess
I found your message after I posted!! I have replied if you want to check.
The one in Lesmahagow is * - there is no other home comes close as far as activities are concerned! Most of them give up trying. The one in Stonehouse is * - hardly any activities though!
Elspeth

Please note that names of care homes are not allowed on the public forum on TP. You may wish to send a pm to Alfjess
Brenda

 

[Skye]

Hi Alfjess

Sorry I haven't replied before, been having a rough time myself.

I do think you're doing the right thing, trying to find a good home for your mum and dad. It's such a tough decision to take, but you've done so much, and there comes a time when we all have to admit that we need more help.

It sounds as if caring for them has taken over your life, and that's not good for any of you. Let the professionals take the strain, so that you and your husband can enjoy visiting them without the pressures you're under at the moment.

Good luck,

 

[hawaii50]

sorry for breaking the rules!!

been so busy with my own drama I hadn't gone back to read this thread. Sorry I didn't realize I couldn't mention names. Wont happen again.

 

[Nell]

My problem, as you know, I have two, while I know it is definately passed the time when Mum should be in care, Dad is no problem and would probably be even less of a problem if it wasn't for Mum, nagging and ridiculing him.

After 60++ years of marriage, I can't think of separating them, so that is my problem.

Do I put them both in care? Separate them, ie Mum in care, Dad at home with me?
I know that even if both are in care, it could come about that they will be separated anyway, but I can only hope that when that time comes, they hopefully won't know any different.

I am not normally so cowardly.

Thanks
Alfjess

Dear Alfjess,
Cowardly? You? My goodness! If you are a coward I'd be scared to get out of bed each day and face the "non-cowards"!!! Only joking, but you are in NO way a coward. I think you are facing one of the worst dilemmas anyone can imagine.

Is there absolutely no way your parents could be in a home together? Even if it meant separate rooms? I know we faced a similar situation with my Mum and Dad (altho' they actually made the decision themselves) in that Mum could no longer cope but Dad was (essentially) all right. Dad had been disabled for so long that he could do nothing without Mum, so there was no choice involved really.

In your case it sounds as if your Dad is OK, but as he does everything your Mum tells him to do, and doesn't always act to correct her excentricities perhaps he would be less able to cope on his own than he seems . . . . ??? (just a thought.)

I do think it sounds like time for them to be in care - but, as you say, only you can decide. I only hope you can find a suitable solution that makes you feel OK.
Thinking of you and sending you my most caring best wishes - Nell.

 

[alfjess]

Hi Alfjess

Sorry I haven't replied before, been having a rough time myself.

Hi hazel
Sorry you are having a hard time and thank you for replying, when you are having problems yourself.

If I could help in any way, I would gladly

Yes, as you say, much as I have tried, I cannot cope for much longer.

Mum is very difficult, demands attention 12 - 16 hours per day, when not at daycare.
Daycare staff are struggling to keep her indoors, she tries to abscond every 5 mins. The staff tell me Mum says, she is going to see, HER COUSINS.

However, Dad is much easier to deal with and can still occasionally, make witty intelligent comments. In the good old days, Dad was quite shy and quiet, but could come in with very funny comments, had a great sense of humour and was so calm. He still has a sense of humour, can tell when Mum is saying something ridiculous and just maybe, makes a comment which makes all of us laugh or just laughs to himself.
Most days he doesn't know what are male or female clothes. (I think my Mum tells him what to wear and as usual, he does does as Mum tells him) Talk about the blind leading the blind
He can come to me for dinner wearing a lovely pink jacket, complete with brooch and chiffon scarf, It is so sad. Dad was always a Man's man

So therein lies my problem.

I know Mum should be in permanent care, but I am not as sure if Dad should.

Thanks again everyone who has tried to help me with this problem

Alfjess