Hello

[Rootshalle]

Hello, I'm a new member & just registered. I've often browsed the forum & sought some comfort from the fact that others out there face similar issues as I am. I thought it's about time to introduce myself & my mum but why now? Well Mum, 84, has recently gone into a care home on a trial basis and to be honest I feel mighty guilty about it all - even though I know she cannot cope on her own and I cannot provide the day to day care she needs. Of course she thinks everything is fine & that she does all her own cooking & shopping and so on. There is very little alternative to a care home in my opinion, mum has refused all help from social services other than a grudging acceptance of meals on wheels. I feel I've let her down by putting in a care home, I know it wouldn't be her choice, but the positives out weigh the negatives so why the guilt? She'll be cared for day to day, I'll probably see her more as I won't be running the errands etc, other family will see her more, she won't be wandering the streets lost & being picked up by the police day and night. A care home all makes sense, so why the guilt or is that more about me than about her I wonder? I guess it is. I've just written a cheque for 2 weeks at the home, here am I spending my mum's money (and a heck of a lot of it) on something she doesn't want, but that's what its there for - to take care of her. That's what my dad (deceased) would've wanted surely.

I feel better for writing, or rambling! If any one out there has any words they can offer please feel free. There's plenty more info I could provide to clarify what we've been dealing with. I hope these feeling pass as if my mum settles in to the care home there are so many positives, but its impossible to reason this with her.

I'm due to take her for another clinical assessment as to date there has been no formal diagnosis of her condition or behaviour.

With best regards - R

 

[Canadian Joanne]

Dear Rootshalle,
We all carry the guilt monster on our shoulders. Sometimes it falls off and we have a break, but it eventually returns.

I can only say that with time, it will get easier for you. My mother has been in care for going on 9 years now and I still pangs at times thinking of her in care. But I promise you, it will definitely get easier.

I know she cannot cope on her own and I cannot provide the day to day care she needs.

Intellectually, you know you've made the right decision, it's the emotional component that's so hard. But you've done the right thing - think what could happen to your mum if she wandered out in the middle of the night, inadequately dressed etc. You must just hang in there.

You've done your very best. Only a loving child would feel so badly.

Take care of yourself.

 

[Grannie G]

Hello R.

that's what its there for - to take care of her. That's what my dad (deceased) would've wanted surely.

This is how I felt about my mother`s money; it was hers as long as she lived and if it had to be used for someone to do what I was unable to do, so be it.

Don`t feel guilty. Your mother is unable to care for herself, you are unable to provide the care she needs, so you have done the best for her by finding somewhere to meet her needs.

I hope your mother settles well and at least when you visit you will have some quality time with her instead of anxiety abort her welfare.

 

[Helen33]

Dear R

I haven't much to offer other than to say that I'm glad that you have Talking Point in which to voice your concerns and that it has provided a supportive role in the past in providing you access into the wider caring community.

Hopefully your feelings of guilt will settle once you experience the benefits of having your mum in a safe environment and when she settles.

Love and best wishes

 

[sue38]

Hello R.

We are in a similar boat. My dad went into a care home almost 4 weeks ago now and it's a strange feeling isn't it? You know that it's (probably) better for them, that they are safe and cared for, but you see your parent in a care home setting and think 'this isn't right'.

I (like you) am struggling to differentiate between whether my feelings of doubt are about my dad or about me and my needs. Mostly I feel a loss of control, that things are happening with my dad that I don't know about (or at least don't know straightaway), but does this affect my dad, or am I just a control freak - probably the latter!

I don't now have that sinking feeling every time the phone rings, I don't dread asking my mum (his main carer) how she is and seeing that look of anguish on her face.

I can take myself off into Manchester shopping for some serious retail therapy like the 'old days' ... and wander around miserably before coming home with just a new scarf (cos it was so flipping freezing) and some Christmas Cards I don't really like...

It's a time of adjustment for both of us.

How is your mum settling? At the moment my dad seems to be 'observing' rather than joining in with anything. Maybe that will come with time.

Welcome to TP.

 

[Rootshalle]

All, thanks for your comments & support. You're right intellectually I do feel I've done the right thing but constantly keep turning it over in my mind. Everyone I speak to tells me I've done the right thing but that doesn't really help. Only time will tell & hopefully she settles in. I feel most guilty about having to trick her into going.
This all started back in May when mum collapsed at a meal out, the paramedics said it could be that she hadn't eaten all day and then eating a 3 course meal was too much. This really got the alarm bells ringing as whenever I popped round to see mum, usually at weekends, the fridge would be empty & i had fears she wasn't eating regularly. So I tried organising some help via Social Services & Age Concern - because mum refused help this made it all the more difficult. I finally got her to agree to meals on wheels after another attempt and meeting with social services. Whilst this was going on I became more and more concerned about mum's behaviour, packing belongings up, ringing me to take her home "mum you are home!". I then contacted her GP (following some advice in a thread on this forum) and he started a process in June that has yet to see any formal diagnosis. Every step of the way I've been with her on a process she doesn't understand (I do explain everything but she forgets) or want - she's a stubborn one & a "fighter" - more of that later. Next step is a psychiatric test of some kind.

How's mum settling? - up & down. When in company with others I'm told she's OK, when not in company she wanders round waiting or looking for me to take her home. I was advised that it may be best for me not to visit at the weekend as she will think she is going home. I agreed readily not least it would give my wife & I a weekend without running around. Or so we thought. I mentioned mum's a fighter, well she tested a fire escape door a little too hard and made a break for it!! The home is only 15 mins from her home so she made a beeline for it. I was out and my wife had to go and pick her up & take her back. Sorry but after the disappointment of undoing a weeks settling in I had to laugh and admire mum's strength. But over the last day or so its played on my mind - maybe mum isn't ready to go into a home, thing is when my wife was settling her back into the home my mum couldn't remember ever being there in the first place. I think I naively thought the settling in period would be easier as often mum wouldn't realise she was in her own home. That seems really naive now. So I haven't seen her for just over a week and I'm worrying more now than I was before & she is much safer and being cared for. How can I face up to her and look her in the eye now? Being cruel to be kind goes through my mind quite often.

Oh I can really relate to that sinking feeling when the phone goes...i hate the phone ringing .., that had lessened over the week until my mum's escape bid. Despite this I'm really impressed by the care home, the staff all seem professional & treat the residents with respect. It has a nice feel about it. As mentioned its right on our doorstep. My thinking is that its better for mum to go in now as she needs the care plus I have a nagging worry that if I soldiered on with her in her own home that her condition would get worse and I would effectively be told that mum would have to go into care & it would be taken out of my hands. Then I would really worry and feel guilty for not doing my best for her. Mum had also lost her door keys and so effectively would lock herself in her own house - that's safer than wandering the streets in a confused state but not a situation I could allow to go on indefinitely. And still I question whether she needs care I hear you ask.


Sue I hope your dad also settles into his new surroundings, & that your mum is coping also. I of course wish you well also. Keep posting as I intend to, maybe I can help others as you have helped me think things through. I hope so.

best regards - R

 

[Canadian Joanne]

Hi Rootshalle,
Just to let you know - my mother was 64 when she went into care and she was physically fit as a fiddle. She escaped once also. There was a keypad code to use to open the doors - she looked so young and that she didn't live there, that visitors let her out. She would exit seek for some time afterwards.

It took my mother about 3 months to settle in completely but it's usually not that long for most people. We were blessed . Every day she would pack her clothes up in bin liners etc (how she found them, I'll never know) and every night I would come in and unpack her.

It's early yet for all of you. Your mother is not the only one who has to settle in to the home. You have to settle in to the fact that she's in a home. It might be a good idea to take a few days' break from visiting her.

Take it easy. Or try to, at least.

 

[Sooe]

Guilt - how it lingers

Just read and read the letter from R and replies, looks like the devil Guilt is out for us all, I have just wondered all day in a daze just thinking and thinking, MIL's first day in Nursing Home today, maybe its the not being needed by them anymore, or maybe its just we miss them so much, this time of year is just awful, retail therapy NO TA - even for the shopaholic I used to be, how can we think of Xmas, without the usual fun, laughter and gift getting (even if for years I have had to do it all for her anyway!!) its just not the same, too early to enter home? maybe but then just maybe she will settle happily. Your right its great not hearing the phone jangling 5 mins after you have just left her and hearing her tell me we have left her on her own for days! All the signs are not easy to see, until you realise its too late to try and remedy it all, I guess there is no stopping this horrid disease, fingers crossed they will settle happily and have some good times too, even if we think we can't anymore. Its scary reading the stories, and see your story mirrored so clearly in them all. Its also a comfort to know that your not alone and can droan on peacefully to people who all understand and know how we all feel.
Good Luck once again all is all I can add.
Sooe

 

[Lanie]

Hi

I don't think the guilt ever leaves it does subside and then surface when you least expect it.
My Mum moved into a home at the beginning of October on the whole she has settled well. But is becoming angry as she isn't coming home and to her she has nothing wrong, she doesn't comprehend that she can no longer look after herself she thinks she can cook and wash etc but she can't even dress herself without help. The hardest thing is having to tell her she'll come home when she's better but she'll never be better and as the weeks and months pass a little more of my Mum disappears and I hate it.

I have to lie about her money as she says you better not be spending my money to keep me in here, she doesn't realise there is no choice, if you have money you have to pay for your care and thats it. I couldn't explain that to her though.

The home is good and she is doing more than she has for years and like you I feel that it may just slow the illness but only time will tell.

I hope your Mum settles soon, but alot of people continually want to go home and I think we all have to get used to that.

Take care

Lanie

 

[Carolynlott]

The guilt I feel is for the trauma that I put my Dad through when I put him in his care home. He didn't want to go and if there had been someone to stay with him and care for him 24/7 he wouldn't have had to. Mum couldn't care for him, but I could have if I had been prepared to give up my job and my family - I wasn't prepared to do that, so I guess that's where the guilt comes in - that I put myself before him.
He has never settled at his care home - he has been there almost a year now and has been in a varying state of mental anguish/anxiety ever since. All Dad wanted was his old chair in front of his own TV with my Mum by his side, but all that was taken away and instead he has no comfort, no privacy, no love, no peace. Maybe he wouldn't have declined so much if he had stayed at home. That's where my guilt comes from - knowing that I had to do something to him he didn't want.

 

[jenniferpa]

Carolyn - if I could crawl through the screen and give you a (gentle) shake I would do. I suspect if your father was well he would do too: loving parents do NOT expect their children to give up their lives for them and would be mortified to think that you feel guilty that you didn't. It's not your fault - it's the damn disease's fault, and don't tell me he's not loved because I know you do love him. I understand the feelings and that someone telling them to go away won't make a blind bit of difference but that's what guilt is: irrational. He's safe and taken care of, even if he isn't happy, but you know what? He probably wouldn't be happy anywhere because for some people, that's just how the disease hits.

Love

 

[Helen33]

Dear Carolyn

I'm in a helping profession and have held a long standing belief that it is important to have a healthy work/family balance. I firmly believe that there is little point helping someone to health whilst causing someone else to suffer!! Because of this belief I have constantly struggled to keep a vigilance on the balance. Dementia care at home becomes very demanding and difficult (if not impossible) to keep that balance. This is not your fault. Did you choose you because it sounds like you chose your family to prevent them from having to deal with the loss of you!!

Love and best wishes

 

[Carolynlott]

Thanks - I know the guilt feelings produce irrational thoughts (or maybe it't the other way round?). I see my Dad in such an unhappy state and think what can I do/could I have done to prevent it/resolve it. The answer is ... probably nothing. You are right and it helps to think in terms of it being the disease's fault but it is hard having no-one to share it with (apart from everyone here) which is maybe when/why the irrational thoughts/guilt creeps in.

I often think - if he could have foreseen this when he was well, what would he think, what would Dad have wanted/expected me to do, and I do try hard to convince myself he wouldn't have wanted me to be unhappy or feel guilty.

C

 

[Christinec]

Hi Carolyn,
I often feel the same about Mum. She has been in a care home 18months and still says all I want is to go home.

Problem is when I visit Mum I feel like it is all my fault this happened. I know I could not look after her and that I have a family and full time job and that my whole past relationship with both parents has always been strained. I left home very young and have had minimal contact for almost 40 years. Excuses, excuses are the words I hear in my head as I write this. I had to try to make sure my Mum was looked after and not left alone but like you I feel it is my fault some of the time. But then I remind myself that although Mum can present well for short periods if you go to the toilet she is really suprised when you come out as she has forgotten you were there,she has no sense of time, hates being alone even for 2 minutes, gets really anxious and cannot dress without prompting, cannot make a cup of tea and has not ability to make even the simplist decision- she is not safe on her own. She needs someone competant there all the time but she wants to go home so she can look after the house. I know she cannot but sometimes I wonder if I have it all wrong and she would manage then I remind myself of the hellish years of trying to help - even now when our phone rings I feel sick.

To cope I try not to think about it and occasionally my Mum has said "You cannot look after us you have your own life" and the reality is as others have said that the illness is to blame. The symptons of this illness make life hell for the sufferer and those around them. The sufferer cannot escape but would they want us to go with them? I certainly would not want my children to be feelig as I do and have given them clear instructions. When I visit her care home I see what is left of Mum without having to face the full grim reality of her condition - so I think going home might be possible but if I really think about it I know she is in the best place.

TP is great but sometmes when I read what others do and I feel even more guilty but what purpose does it serve. I am sure you have ,like me, done the best you can in the circumstances.
Thanks for posting

Take care - you can only do so much.

 

[Carolynlott]

Christine,
Your post struck a chord and thanks – I know, I often feel that others on TP do more than I do. Maybe it’s different when it’s your partner and not your parent. Like you, I left home at 18 and was never close to my Dad, but that doesn’t stop it hurting. When I was rung at work on Friday to tell me that they would stop his galantamine I knew that would speed his decline and I wept. I am facing the same situation with my Mum who is hanging on at home but I don’t know how long she can – she too has no sense of time, hasn’t washed for months until today when I took courage in both hands and gave her a shower. Now her twin sister, who she relies on daily for support has fallen and gone to A&E and as I write I am waiting for news of whether she has broken something. If she has there is no-one to take care of the pair of them but me and I am so scared.
I know what you mean about the phone ringing – today 1st thing when I went to take Mum shopping there was a police car which I thought was in her drive but it was in her next door neighbour’s – I felt so sick. I don’t want to put my own kids through this hell.
C

 

[Rootshalle]

Just visited Mum

Hello all,

I've just got back from visiting my mum, I dreaded what reception I might get from her but it all went well. She me greeted as she normally would, no problems. She thinks she is in hospital and is waiting to go home, not once did she ask me to take her home which surprised me. She is not anxious or upset at all. We'll see how it goes. I hope she's ok, I love her so much.

I'm taking her to a local psychiatric unit on Wednesday, not sure what tests they do & how long results may take? I suspect results will be sometime in the New Year? If anyone has any experience of this please say. To let you know where she is in the process we've met the GP, he referred her to the Clinical Assessment Team, then they have referred her to the psychiatric unit. All will become clear I'm sure.

So today has been more one of relief after a depressing week.

Thoughts also with you all, thanks for your posts,

best regards - R

 

[Lanie]

They sometimes do memory tests and these results you will get straight away, they feel the need to do some kind of scan and they usually take about 8 weeks to happen and then a further week for the results. Depending on how your Mum is and at what stage she is at and this tends to be about how her symtoms present, they may even start her on dementia medication if that is what they feel she has, it does vary from area to area on what they do. Glad for you that your Mum seems to have settled well.

Take care

Lanie

 

[sue38]

Hi R,

That's really good news.

We took my dad to my sister's house for the afternoon, and it was quite stress free. My mum took him back to the NH shortly after 4 o'clock. It is the first time he has been to one of our homes since he went in 4 weeks ago. We'll see if he settles back at the NH. Fingers crossed.

 

[Rootshalle]

Thanks Lanie, be interesting to see how Weds goes. Someone from the care home may go with me as well. I'm a bit wary of anyone prescribing medication, my mum has rarely had to take anything in her life & I can see probs ahead on that front - still that's all for the future, we'll see. I'm really wanting to understand her condition.

Sue, sounds like some progress for you also this weekend. Nice you've been able to take dad out for a while. I hope all has gone well.

best regards - R

 

[mizblue55]

i am new as well

Dear R......my mother was in a rehab facility and was doing so-so physically, mentally not so good....my brothers made me feel guilty that she was in the home....(i did not want to take her home, because we are not that close and i have to work full-time)) but they discharged her to my care....i feel so guilty and angry that now i have her, and they are off doing as they please.....i love my mother and i will do what i can for her, she has been with me now for 2 weeks and i cry every night.......