Any advice about taking Mum into my home?

[FifiMo]

Maggie

I've just read your posts and would like perhaps to put a different perspective on this. What you are doing for your mum, rather than something to feel guilty about, is in fact a selfless act. By making sure all her safety and nursing needs are met from within a care home by people who are qualified and there in sufficient numbers to provide the level of care that she needs, you are putting the needs of your mum before your own needs. You should not therefore feel guilty about doing this for your mum. You know that there is not the same level of support that can be carried out in your own home long term for all the reasons you have mentioned (hubby, adaptations, support from elsewhere in family etc) without some members of your family suffering.

What you could perhaps consider is not that anyone is letting your mum down, but that you have created the right environment whereby you can enjoy each other as a family and have quality time together whilst other "outsiders" do the more mundane work for you all in the background. You could consider the fact that if you tried to do all the work yourself from within your own home that the chances are that everyone will become tired and stressed and all of this would then impact eventually on your mum. The very person that you are trying to do your best for. In the carehome option, you can spend all your time focussing on your mum and doing things that bring a smile to her face and make her happy. If you look at the posts from people who have loved ones in care, you will notice that what becomes important, particularly as dementia progresses, is having the ability to let the dementia sufferer know that you are there, sit with them, help keep them calm, share their world, watch tv with them, whatever. This in itself takes time and patience and could never be achieved by someone who is run ragged doing all the other stuff that would be required if you're trying to do all the other aspects of caring at home.

From where i am sitting, I don't think you should being going down the guilt trip route. It is clear that your mum is the one that is important right now. But so are you, and your husband and family too. You will all need to remain healthy in order to continue to provide your mum with the attention she is going to need. So rather than see the CH as something bad, perhaps consider it to be a tool that lets you and the rest of your family give your mum the best combination of care possible for as long as she needs it. Overall, spending quality time with her is what will really count at the end of the day.

Fiona
x

 

[Grannie G]

Dear Maggie

I hope things look a little better this morning and you managed some sleep. xx

 

[Goingitalone]

Thank you to everyone who was there for me last night.

Thank you all for being there last night.

I know what you have said makes sense, Fiona. The longest respite Mum has ever had has been a fortnight. By the end of that she was 'settled' because she knew she was coming home. I'm wondering how long it will be before she seems happy. At the moment it doesn't seem likely to happen but I know I have to give it time.

I did sleep, Sylvia. In fact, I think I slept better last night than I have since Mum went in. But I'm in pain with my jaw this morning so guess I'm clenching my teeth again and wearing away that joint. . And, yes, I'm afraid I have blown the diet again this week but it seems strangely insignificant just now. I know I'll regret it when I look in the mirror and see that dumpy little frame looking back at me.

It must have done some good to have a good old cry. It doesn't change anything and I still feel terribly low but I know I have to carry on with life, do some nice things with hubby and grandchildren and 'get my life back' after all this time with only Mum and bro on my mind.

I do feel guilty, Lin and I am being silly. My Mum didn't take her Mum into her home. She got on with bringing us up cause she had her hands full and her 'big sis' took care of everything. Mum would probably see my problems if she was dementia free. When she was well and bro was really ill Mum and I muddled through. I had 4 little children and a dinner lady job in school. I used to leave work, go see bro in the mental hospital then pick up kids from school. Mum used to do the morning visits to bro. We were very much a team.

So I know she would want me to continue to look out for him now.

Gonna get on with life today and leave sibs to do the visiting this weekend. Hopefully it will all be in perspective by Monday if sibs don't phone with horror stories over the weekend.

I might even turn the phone off!

Thanks for being there last night.

 

[Grannie G]

I'm so pleased you got through the night Maggie. I hope it was the worst over for you. I think you will realise what I mean as time goes by.

When I was caring for Dhiren, he was my only responsibility and I honestly thought I could keep him at home with me until the end. it wasn't to be and I tried my best.
You have tried your best too Maggie. I think and hope it will be acceptable to you eventually.

Diet? What diet?

 

[BeckyJan]

Gonna get on with life today and leave sibs to do the visiting this weekend.

That sounds very positive and I hope you can relax a little and enjoy time with your husband and family. Please convince yourself that you have done the right thing and your Mum will be fine. I understand about your jaw pain - I hope it eases soon as you begin to 'let go'.

Best wishes

 

[piedwarbler]

Morning Maggie.
I'm glad to hear you feel a little better today. If I can add my thoughts: I didn't take mum into my home for a few reasons:
A couple of friends told me it would affect my marriage
My husband told me it would affect our marriage
I thought about the long term : what about when mum needed 24 hour care? How would I cope alone with sleepless night?
How would I cope with the hours when I was out at work?
Mum only likes lamb & mash so I'd have to alter our cooking routines
Mum is demanding and has no concept of waiting so effectively I'd be her only carer and have to be available 24/7
Could I get to a point where I'd have to give up work and could I afford it?
What if I get sick?

Some of these things I could manage easily but others carry more weight. I wish our culture and society did favour caring for our elderly ourselves, but I don't feel it does. If I had a number of siblings nearby who wanted to do their share, I'd take it all on,

but there's just me. And then of course I did get cancer so things got much harder.
I do still question my decision and I do still feel guilty. But I don't think I could've coped any other way in the long term.

Take care of yourself xx

 

[Skye]

Hi Maggie

Sorry I wasn't here last night, way past my bedtime! I'm so glad you had so much support, and managed to sleep well.

I've not much to add, except that I go along with Fiona and Pied 100%. You are doing the best thing you possibly can for your mum, ensuring she is safe and cared for, and I know your own caring won't stop. But the time you spend with her will be quality time, ensuring that she knows ahe is still very much loved.

You certainly mustn't put your marriage at risk, that's the last thing your mum would want. And you'll have more time to care for your brother, this must be so stressful for him too. Perhaps you'll be able to visit your mum together, so that the family unit remains intact, that would be good for all of you.

As for the guilt monster, I'm afraid he's not easily got rid of! I know he attacked me regularly when John was in care, and he always strikes when things are going badly and you are at your most vulnerable. Try to push him aside, he's not on your side.

We however are on your side, and will always support you.

I hope you have a lovely weekend,

Love,

 

[Sue J]

Hello Maggie

Pleased that you managed to get some sleep and feel brighter today. Hope you are able to enjoy a lovely weekend.

Best wishes
Suex

 

[beena]

Oh Maggie, how I sympathise. I always said Mum would not go into care, but honestly, that was before I had (only a few) months of Mum living with me and that was 4 years ago. It was hard enough then: whilst wanting the best for Mum I felt my life had been taken away and, not only that, I felt the situation had the real potential to wreck my personal life - it was interesting that Mum didn't appear to see me as "daughter" any more but more of a friend of her own age (and she was 36 when she had me!). I felt old, depressed, worn down and, to be honest, started to resent the demands she (unknowingly) placed on me.
Friends and family said they could see the effect and I shouldn't do it, but "this is my mum!" was always my reply. My GP said I was heading downhill fast...and, if that happened, what would happen to Mum?
Mum went home and the problems started: we put all in place to hopefully make it run o.k, but it never really was - I had my head in the sand for 3 years but didn't want to admit what I really knew was needed for her wellbeing. Her GP said it would reach crisis point, and it did.
Mum is now living in a lovely home and has people making sure she's o.k and, if there are any problems, it's not as if I'm on the moon: I can get there and know until I arrive she's not alone. Yes, it's not her own home and of course this is distressing to me, but you have to think of the bigger picture. Sometimes I look at Mum and see Mum of 20 or 30 years ago and this really gets to me BUT are you and I the same people we were physically when we were in our 20's or 30's?
To sum up, incredibly hard as it is right now, PLEASE give you and your Mum a chance to adapt to this huge change. It is such early days. Both of you deserve a chance to be happy. I have had a couple of blips with Mum and have thought "this is not for her, come home with me" but I bit my tongue and will continue to do so because I know, in my heart of hearts, when we are together it is a happy time. Had Mum come to live with me she would have had no other interaction with people of her own age and experience and it would have just been the two of us, alone, battling it out as the situation became more difficult. It is better now. Give it a chance.

x

 

[RosmaryW]

Dear Maggie I couldn't love my Mum more if I tried . We have been as close as a mother and daughter could possibly be.
My Mum was diagnosed with Alzheimers and was no longer able to cope living alone. My husband and I had a long talk and decided she could come and live with us. My husband had always got on so well with her and they have been the best of friends for 35 years.
In the space of 18 months our lives changed. My Mum has turned from the sweetest kindest person into a moaning unhappy miserable selfish women. Never in a billion years would I have thought she would become like this. But like a lot of people I never understood dementia. Talking Point has been been very very helpful and informative, please read as much as you can and ask as many questions as you can. Please please think very carefully about what you do. This WILL change your life and your husbands.
I hope you reach the best decision. My very best wishes Rose.

 

[germain]

Hi,

I always thought of myself as a pragmatic, practical person who took everything in their stride. No time for guilt or emotional hang ups

My Mum came to stay with me for 3 weeks between leaving hospital and moving into extra care.

At the end of it I was "on my knees" with tiredness and tears. I loved my Mum to bits but 3 weeks with mid stage dementia nearly finished me off !

I have enormous admiration for people who do it and manage but reading some of the threads on TP makes me think "at what cost".

I think Fiona has written a very, very considerative post. There are different ways to love someone and look after them.

My heartfelt advice would be "Don't do it "

Best regards
Germain

 

[Christin]

Hello, I have read through your thread and feel for you so much. This is such a difficult time for you all, and it is such a personal decision.

My FIL lived with us for more than 20 years. We are not sure he had dementia when he first came to live with us but he was unable to cope on his own, he had never looked after himself and had had a very traditional marriage up until his wife's sudden death.

It wasn't all bad but gradually, over the years, we became more and more concerned until it came to the point when we could not leave him alone at all. I gave up my job and stayed at home, we had sitters for two sessions a week, and a morning carer to help him wash and dress. Gradually he did nothing at all for himself, I had to go to the bathroom with him. When he searched for us all day and all night, and wanted to be with my OH all day and all night we could no longer cope. It is a lovely idea to have your mum in her own home during the day and with you at night, but to be honest I think it would confuse her greatly.

I don't know if this is helping you, I hope it is. I just want you to know that, in my opinion, its not wrong to place a parent in permanent care. My FIL now has 24/7 care, we reached a point where we could not provide that.

I agree with others, please give your mother some more time to settle. My FIL has taken about 5 months but we do seem to have reached a point where he feels at home where he is now.

I am sending you a hug and my best wishes. xx

 

[beena]

Maggie: think about what you said about your Mum - you implied she always did what she thought was right for you, no matter how much hardship and emotional distress this caused her and no matter how much easier it would have been for her to take a different course. At the time you were a child, so you were none the wiser - as an adult you appreciate all she did for you.

Now you and Mum are in the same situation, but reversed. Now you have to think about her in a different way (which is so against the grain and is awful, but has to be done) - the roles are reversed, however harsh this may seem:you have to grit your teeth and do what you truly feel is best both for you and her, however awful for you.
Hard decisions are never easy, as it seems your Mum well knew.

Be realistic: after the emotional decision, could you cope longterm, however many years?, could you accept the possible destruction of your life as you know it?, could you cope with the physical and mental deterioration associated with this s----y disease?

This is only for you to decide but, if in all honesty (with no-one judging and breathing down your shoulder), ask yourself maybe, why did your Mum go through so much to make you the woman you are?

I could only hope that in my latter years someone will care enough to think about my general wellbeing as much as you are doing about Mum - I have no husband, no children, but a partner, whom I love dearly but who is much older than me - the thought of being in the situation as (your and my) Mum is frightening to me but hopefully this will make you think (as it did me) love (real love) enables us to change and make decisions we never thought possible in a million years...

Sounds over the top, but this situation is making me think long and hard about how we cope.

x

 

[Coletta]

Before your mum went into the care home, did you try for you and your family to take turns staying at your mum's house at night, as you live in the same road? Sorry if Im stating the obvious but it has not been mentioned. We did that for many years and worked very well until MIL went blind and we moved in together 10 years ago. It would only work if your brother could cope during the day though.

I agree that it would probably be best to keep your mum in the home to see if she settles first. Unless your husband is a very patient man, and you get a lot of respite help from your family, it will be very tough, though also rewarding.

Love and best wishes
Coletta

 

[Goingitalone]

You are all so very kind and sensible. The beauty of TP is that when we are distraught and probably not thinking straight, there you all are to put things into perspective.

Yes, this is one of the worst decisions I have ever had to make.

One thing I am very clear about is that Mum was adamant that I should look after the interests of my schizophrenic brother. He's the youngest and in many ways most vulnerable and Mum went to great pains to make sure he would be ok after her death. So I know that she would have made the sacrifice of going away if it meant that he would be ok. I had lost sight of that last night.

She was at risk at home because, even with all the support I and the carers put in every day there were always the night hours to consider and our local authority don't fund night sitters. Coletta suggested taking turns among the family to cover the nights. I'd have been willing to do that but I'm afraid my sibs never would consider that much input. My daughter probably would have done a couple of shifts but she has chronic depression and a hubby and 2 children of her own to consider. She is a huge support to me but I do try not to abuse her loyalty.

To be fair, it would have been hard on everyone, especially after work (my sis works part-time) and having Mum cared for during the nights, especially lately as she's sleeping very poorly, does make good sense.

It was getting really difficult before Mum went in for this last respite.

I think the decision is the right one. And I also think the timing was as fine as ever it could have been. Even one more day could have cracked up little bro and Mum was getting so distressed she had started being verbally aggressive and pushing her cup off the table. It would have been tragic if her lovely relationship with little bro had broken down. He'd have had awful memories to deal with.

I just keep telling him what a wonderful job he did in looking after Mum for so long. She would be so proud of him.

I just wish the home was a little nearer. If it was in our area I could have visited more often. As it is an hour's journey away I can only manage 2 or 3 times a week at most. On Friday she slept for most of my visit. I'm afraid that, if she sleeps when my sibs visit they may conclude that it's not worth them visiting as she can't remember who has visited at the best of times. I know I can't feel responsible for what they may or may not do but I suppose I try to make up for it by being there as much as possible. After all, Mum had 5 of us, 2 are ill so can't be there as much as they'd like.

On a positive note, though. I'm determined that I will enjoy those visits. I will take her out in her chair as much as I can so she can enjoy 'people watching.' My daughter and I will take her to the parks so she can see the dogs being walked-she loves animals. We have plans to make the rest of her old age enjoyable for her.

I already have some really happy memories of this last few years with her. I'm determined that the picture I have of her in my mind will be that beaming smile, not the anxious face and shaking hands gripping that lilac dog-a vivid picture that has haunted me this week.

I'm embarrassed that I let out so much emotion last night. But I can honestly say that your support and common sense sustained me through one of the very worst evenings of my life.

Thank you all so much.

Maggie

 

[Grannie G]

Dear Maggie

Please don't be embarrassed. You allowed TP to do what it does best, support fellow carers , particularly in times of crisis.

There are those of us who have been before you, those who are in the same or similar position and those who will come after you, who experience a watershed at some time or other throughout the progression of the illness.

And now the responsibility of your mother is being shared you are left with the continuing responsibility for your brother. You certainly are not letting your mother down Maggie. xx

 

[piedwarbler]

That's what we are here for Maggie, to support each other. Please don't even think of feeling embarrassed.

Big hug x

 

[Sue J]

Dear Maggie

I'm so pleased you sound so much better. You'll get there and so will Mum and your brother, and maybe the others may respond differently too as it must have been a burden for them knowing your level of input against theirs, so now some of that responsibility is taken by the care home, it may help them to care a bit more too.
As for being embarrassed, don't be - it means that you free others up to express pain and turmoil when and if they need to.
Thoughts are with you

Best wishes
Suex

 

[harvey]

We have just been through a similar situation, MIL has always had her own way and we have always let her. In the last few weeks she has gone downhill fast and two weeks ago the doctor declared her a danger to herself. We moved in with her four years ago after my FIL died for three months and our life was a living hell. We were unaware for some time that she was suffering with dementia. Luckily for us we had those three months with her or we may well have had her to live with us, that would have been a huge mistake! She was always dictatorial, very selfish, and could be very nasty to her nearest and dearest but a perfect angel to friends & strangers. Her illness just made her worse. Even living twelve miles away has caused so much stress and upset.
For all that, when it came to the decision to place her in a care home we have spent many sleepless nights. The worry of being the ones to make that decision and the worry of her reaction is huge. Have we made the right decision? We just don't know, we do know that she is not capable of living on her own any more and we also know from our own experience that 24/7 care in her own home will not work either. It is very difficult to care for her now as she is still determined to do as she pleases no matter that it is dangerous. She has fallen so many times, had several mini strokes, is now doubly incontinent is also very frail and still losing weight. As she has always had her own way, she sees no reason why she should listen to people who are trying to keep her safe.
Tomorrow we will go over and prepare her clothes etc for taking into the home. On Monday we will be taking her to the home. Don't think there will be much sleep for a while as the guilt monster is raging through the house. We had to choose between having her cared for 24/7 in a safe place or leaving her in her own home. I sometimes think it woouldease our concience to let her have her own way and let her stay at home. if if anything did happen then, guilt would be even greater.
Caring for her over the last four years has already had a huge effect on our marriage, I know for certain that had she come to live with us it would have destroyed us.
Your Mum sounds lovely so the circumstances are different, however you also have a lovely family. Someone once told me when my children were very small, not to put my children before my husband. The children would be off living their own lives one day and then it would just be me and my husband. You can love and cherish the children but do not alienate the one closest to you. I always remembered that, followed the advice and forty years later how true it is. xxx

 

[Lisa74]

Don't do it! she may end up loving you less!

I think you have a unique situation but to be honest when I first saw your post, I just wanted to scream "Don't do it!". Just to warn you it can be a huge strain!

My Gran has vascular dementia, she can be sooo aggressive and nasty- telling everyone to be "doomed to hell" etc. Even when she's fine, she needs to have supervision for eating so that she doesn't choke, her tablets sorted (2 weeks takes 2 hours of halving, and putting in containers!), meals cooked, help showering/bathing, reminders to do everyday things, to be taken to appointments lots of times a week and to be taken out so that she doesn't get grumpy!.

These chores are nothing compared to the shadow that her outbursts can cast on the whole household. I'm sorry if this isn't helpful, but just to let you know it can be very hard!

On the other hand if your mother is not aggressive, if you have the resources (time, money, mental and physical health) and your husband agrees then maybe go with what you really want to do and keep her! I don't think it would be a good idea to expect her to live at home with your brother all day and stay at yours at night because your brother is too ill and that probably means he's finding it hard to cope with her in the day too.

I think your Mum sounds like an exceptionally lovely woman! but I'm sure she wouldn't want you to suffer because of this xx