A view from the other side. Trying to care for a carer…

uselessdaughter

Registered User
Jun 8, 2009
249
West Country
….I have also not seen many comments from people who are trying to support carers.

My wife has asked me to look at these message boards (and no I don’t think she is a useless daughter at all) so that I can see how many people care for their loved ones at home and manage OK and in much worse circumstances that we would be a present. She thinks her father should come to live with us and I am totally against it for so many reasons and she thinks I am being selfish. Also let me say at this stage that I have the utmost admiration for those of you who do this difficult job.

My FIL has Alzheimer’s and has been showing symptoms for at least five years. He was formally diagnosed about a year ago. He has now got to the stage were his short term memory is practically non existent but before he reached this stage we tried very hard to get him to move nearer to us (he currently lives about 200 miles away). We were adamant that it would have to be warden assisted because apart from us he knows no one locally and we needed to be sure that someone was keeping an eye on him on the days when we could not get there. He was totally against this as he had no intention of going into one of “those places”. He did agree to look at some properties, flats and bungalows, but could not be persuaded that it would be a good idea. My wife works part time and would have been able to call in most days.

So we are now at that very difficult stage were she thinks it is her duty to have him here and I will not agree. I do agree that he cannot stay where he is for much longer because he just cannot manage and is desperately lonely. We have hardly spoken for a week and thus her suggestion of my putting my views on this forum for comment so that I can see it can be done. I have to say that in nearly 40 years of marriage we have never been like this with each other before and I just hate it but I also feel very strongly about it.

I have just retired after working since I was 14. In recent years I have had to work overseas at times and now I have retired I want to enjoy my home and my garden and my life with my wife. I know that sounds selfish but FIL’s mother lived with Alzheimers until she was 99 so if FIL does the same it could be for 8 or 9 years. By that time I will be nearly 70 and too late to do the things we want to do with our lives. My grandfather, father and one uncle did not live long enough to retire and I have always been determined that if I made if this far I would make the most of it.

I know none of this is FILs fault and this is a dreadful disease. However, he has got to the stage where he cannot be left alone in our house at all because he gets confused about where he is. He does not like us having friends in because he cannot cope with the noise and activity. So, in effect we would be trapped at home. My wife has said I should do the travelling, but I don’t want to do it on my own. We love music and have the radio or CD playing most of the time when at home but when FIL is here he doesn’t like it (he is deaf and it messes with his hearing aids) so we have to sit in silence. The last time he was here I found myself standing in the kitchen on my own just so I could listen to my programmes. If we have the TV on he never wants to watch what we want to and if we give him the remote it goes channel 1, 2, 3, 4, 5, 1,2, 3,4,5 and round and round and round until I can’t stand it anymore. I’m sorry to rant on but I just can’t see how we can all live like this. I don’t believe it is fair on any of us.

FIL is of course getting worse and still living on his own. He has carers in twice and day and meals on wheels. His son lives nearby and sees him three times a week and we visit for a weekend every month when we spend the time cleaning, doing general maintenance and in the summer doing the garden because FIL refuses to have a cleaner or gardener. My BIL has three children and cannot possibly fit in any more help than he currently gives. Something will have to change soon because it is my belief that the stress of all this will give my wife a stroke or heart attack if not a nervous breakdown. It breaks my heart to see what she is going through. She is like a cat on hot bricks when the phone rings and when we go out she constantly checks her mobile to make she no one is trying to contact her about her dad. When we have been on holiday we are always looking for internet cafes so that she can check her emails. We can’t go on like this and it is my belief that FIL should go into a residential facility where we can be sure he is safe and has company. We would still see him just as much, probably more because we would not be working all the time when visiting. I would also be able to give more attention to my own mother who luckily is very well but of course not getting any younger, just like the rest of us.

I read on one of these threads that life does not come with any guarantees and he cannot always have what we want. My life experiences with my own family taught me this long ago and my philosophy has always been that life should be lived every day – before it is too late. We also need to ensure that FIL is as happy (although he hasn’t been that since his wife died whatever we try to do) and cared for.

So, there you have it. I have promised to take all comments on board and if it turns out that you all think I am being selfish then I will have to have a serious rethink. I look forward to your comments whether you think it is what I want to hear or not.

Love and strength to all the wonderful carers out there.

Keith
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,711
Kent
In a nutshell Keith, I agree with everything you say and think you are quite right.
It is enough to put one`s life on hold for a partner. I do not believe it is necessary to put life on hold for a parent.
There are many other ways support can be given.
 

amy2512

Registered User
Dec 11, 2007
51
Cambridgeshire
Hello Keith and welcome to TP.

I have read through your post a few times now and am so sorry for you and your poor wife. I have come up with no real answers or advice for you, I'm sorry.

I totally understand it from your wifes perspective, she probably does feel like a useless daughter as I know I do as it seems no matter how much you do or how hard you try there's always a little voice in your head telling you how you could do better, how you could do more :(

Would it help for your wife to sit and think about what her Dad would have wanted, not her Dad as he is now, but the Dad that brought her up and had his own hopes and dreams for her. Because this is the voice that she should listen to... what would he have wanted for her?

I can also understand your perspective and can acknowledge that you are in an impossible position. I am only 25 and already I (although am ashamed to say) sometimes look forward to the day when I don't have my Mum to look after anymore. I imagine my life without having to care for her and can see how much easier it is going to be. Please don't think too badly of me, I'm only trying to say that I understand. We all have dreams for the future and plans for what our life would be like and caring for someone can come crashing down and take it all away.

What would I advise you? It is very hard to say. If your FIL moved in with you both would you be able to care for him up until his death? Sorry to be blunt. If yes then I take my hat off to you both, it isn't something I could do I'm not that strong. If no well then he is going to have to suffer another move again at some point. Would you FIL quality of life be massively improved by living with you? Would he be happy, content, safe even? Is your house safe for him, is it secure? Would you bring in outside carers to help him as well?

As someone who cares I don't think your wife will ever feel 'happy' with what you both decide. How can she? Her poor Dad is so ill and nothing she does is going to make him better. What I would strongly advise is making the decision together. The very last thing that you want is for her to blame you and see you as having stopped her Dad moving in. This has to be a decision made together. If he moves in it won't make your wife feel any better, yes it will remove and solve some or a lot of the current issues and concerns that you have but it will bring with it a whole new set of problems and heartache. The situation is ever changing.

Sorry I've probably been of no help at all waffling on like this! But your wife is so lucky to have such a caring and supportive husband, I wish you both well in whatever you decide.

Amy
 

Linda Mc

Registered User
Jul 3, 2005
1,881
Nr Mold
Hello Keith

I don't think you are at all selfish just a lovely caring husband trying to do his best for everyone.

Only my opinion but if your F.I.L went into residential or warden assisted care you could all give him so much more quality time as you would be free from the responsibilities of keeping his home going.

You and your wife and B.I.L could all take holidays knowing he was well cared for.

Thank you for making your long post so easy to read (I have trouble reading long posts without spaces)

I agree with Sylvia it is enough to put life on hold for a partner. Look into the other ways to support the family.
 

amyjane1

Registered User
Feb 21, 2010
33
Hi Keith,

No.... you're not being selfish. As a daddy's girl myself I understand where your daughter is coming from however is it worth the resentment between you and your wife if your FIL came to live with you? You have already said that your FIL does not like staying with you because he gets confused easily as he doesn't know where he is. Would it be fair to put him in that situation permanently?
When my Nan reached the 'point of no return', we consciously made the decision to have her placed in a CH even though she has 4 children and 2 adult grandchildren incl. myself. because we knew it would be better for my nan and for my mum, me and my uncle (who were her 3 main carers).
There is nothing to say your FIL won't be just as lonely if he was living with you, and of course, because of how you feel, there would be continuous friction and arguements which in turn is just not fair on your FIL.
I could be barking up the wrong tree, but I do know this, we made the hardest decision ever to have Nan placed into a CH, but ultimately the best decision for everyone involved. Especially as my nan has now started displaying aggression as part of the disease, and I couldn't put my 2 young children through that.....
Some of the great TP carers may disagree, but your wife has to consider your feelings as well as hers. Surely your wife would be far happier if she knew that her father had 24/7 care and was safe and happy. And you could visit as often as you'd like without having to worry about cleaning etc.
Also I noticed that your FIL has a son who lives locally. Why has he not suggested that your FIL live with him? Or is he of the same opinion as you? If so, then this can also be brought to your wife's attention, especially as he is doing the week in week out caring..... Maybe it's time to ask him what he thinks?
Above all, AD is a hard enough disease without you and your wife falling out over it. I really hope that you both get lots of relevant advice and you can make the right decisions for you both. Good luck, and let us know how you get on,
Love Amy xxx
 

Vonny

Registered User
Feb 3, 2009
4,577
Telford
Hi Keith,

I think most of us here have told your wife that far from being a useless daughter, she is a brilliant one!

Of course your wife feels it's her duty to have her dad at home with you. I'd feel the same way myself and have promised dad that if he ever needs it, and if it's possible, then he will come and live with me. There's the rub. When is it possible and when should a different solution be sought. Plus I only have myself and my son to consider so my situation is entirely different.

In an ideal world we'd all be able to care for our loved ones at home but stark reality dictates that we have to do things differently. I agree that if your FIL was in a safe, secure environment, where you and your wife could visit regularly, that seems a better solution for everyone than having your household disrupted, family rows and rifts which would do no one any good, including your FIL.

The guilt monster would rear its head sometimes, but it does that for most of us anyway, regardless of our circumstances.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Dear Keith

I'm going to come down on your side too.

I'm sorry, 'caring daughter':), but I'm afraid if your dad came to live with you your home would be a battleground, and your relationship with Keith would suffer, as it seems it already is to some extent.

I know you want to do your best for your dad, but would that really be the best? To see you two bickering when you should be enjoying life? Early retirement is a magical time, when you still have the time, freedom and energy to do all the things you couldn't before. Your dad wouldn't want you to give that up.

I'm afraid a care home is the best solution, in my view. A flat, even a sheltered apartment, would only work for a short while. Dementia progresses at its own speed, and at times that can be very quick. You would still be worried, you would still need to keep a close eye on your dad, and holidays would be difficult. Add to that, another move would be necessary, maybe quite soon.

Use your care for your dad to find him the best possible home, where you can be sure he will be cared for, and you'll be able to enjoy your visits, and still have time for Keith.

I'm sorry, I addressed my post to Keith, and in fact have been talking to 'caring daughter', but it's really for you both.:)

These are just my views, of course, and you'll make up your own minds. But please, both of you, don't wreck your marriage over this. It's the last thing your dad would have wanted.

Love,
 

robertjohnmills

Registered User
Nov 16, 2008
225
63
Bexley in Kent nr London
Not obviating a duty. Being pragmatic.

Dear Keith

I think it has already been answered very eloquently by previous messages but I will add my two penny worth anyway, and that is that you and your wife agreed "In sickness and in health, for better or worse". There was no contract with FIL and whilst I do fully understand the emotional ties, the heart is sometimes misleading and the objective point of view more valuable.

Long term he (FIL) and you will be much happier if he has his own place with specialist help and organised activities. You cannot and never will be a home and a nursing home with without major consequnces for your relationship. Neither will you be effective at either doing your FIL a disservice into the bargain.
 

sussexsue

Registered User
Jun 10, 2009
1,528
West Sussex
Dear Keith and caringdaughter

Dont do it.

What a wonderful couple you are. Differing views but still working together to resolve them.

We were in a similar position with my mum, but strangely it was my husband who suggested she come and live with us. We had both taken early retirement a year earlier in our mid 50s and were enjoying life. However we both sold our houses, dipped into the pension fund, and bought a lovely house in the country, built a granny annexe and the horses came to live with us too. So in a way it was a new lifestyle for us as well. We knew that the house and the land would occupy our time for several years and therefore the foreign holidays would be put on hold anyway.

Fortunately my mum is very easy, compliant and non-demanding, but sadly not very mobile. However I often feel like a prisoner. I have zero social life, but spend much time taking and accompanying her to events I have no wish to be at. Do I resent it. If I am honest, yes at times, but for us it was the right solution, and I always make sure that she knows that we want her to live with us.

We do have a set up where she has her own lounge/kitchenette with her own staircase to her bedroom and bathroom. She is happier in her own space where she can sit and dream or have the TV blaring. She feels overwhelmed with what goes on in our part of the house.

From mum's perspective she is safe and content, but to be honest I think she is quite lonely. We dont include her in our lives as much as we probably should (I tend to be very critical of myself) and she has no friends of her own since she moved. I have taken her to various village functions but the once gregarious woman now seems to clam up. Interestingly the highlight of her week is on Tuesday when she goes to Alzheimers Day Care - she really comes alive then.

So why am I saying dont do it. Well it was right for us, in no small part to mum's easy character and her willingness to move. My brother on the other hand could not have done it. He is actually closer to her. But I know without a shadow of a doubt he and his wife could not have her live with them. It is really down to some people can do it and some cant. But unless you both WANT to do it, then it is a non-starter.

You clearly have a wonderful marriage and care about FIL, but you have to do what is right for yourselves as well as him.

If you can come up with some solution whereby he lives closer to you then I am sure that will help.

Take care and good luck

Sue
 

Starshine

Registered User
May 19, 2009
247
Seaside
Hi Keith & Very Caring Daughter

I feel for both of you, and am sure you will both choose the right decision for all of you - no answers from me either I am afraid, but I am now on my 3rd family member in as many years to be suffering (and recently losing 2 members in the process of this horrid disease) AND I am still suffering the sames guilts as the 2 of you obviously are, firstly FIL was still at his home and I cared for him there quite a lot of time, he passed on, then MIL continued with her suffering, eventually we could no longer care for her at home (and not practical having her with us with stairs and our home situation) as much as we completely wanted too, but him upstairs is very wise, MIL went into a nursing home, she had several other disabilities added to the Alzheimers and was completely wheelchair bound, she grew worse very rapidly and we were consoled that this rapid progress would have continued whether at her home, our home or nursing home, she sadly quickly became dependent on at least 2 people in constant watch, we just could not have managed at home, she sadly passed away a year ago now, we are now left struggling with an aged Aunt of 90+ who no longer knows where she is or what she is expected to be doing, we have finally had to sucumb to a nursing home, we have DONE OUR BEST for all our beloved family, but sometimes 'Our Best' hasn't been enough to stave of the inevitable. I now can spend as much time with Auntie doing NICE things, or just chatting, I still care for her, we have lovely times hair washing and caring in all sorts of ways, instead of also having to spend time cleaning house and washing clothes etc. I do regret that a nursing home is the only answer and meeting care home fees are going to be a complete struggle for us to help her with, BUT she seems happy, LOST, but happy and feels she has made the decision for her new home herself, so we have no guilt to feel bad for really. She hardly knew her own home and was just no longer safe to leave at all.
So Keith and loving Daughter bear in mind tall the aspects which I am sure you are still struggling with, and I like the others on TP know you will come to the right decision FOR YOUR OWN CIRCUMSTANCES. No choice will be an easy one.

Good Luck
Starshine x
 

lin1

Registered User
Jan 14, 2010
9,319
East Kent
I totally understand it from your wifes perspective, she probably does feel like a useless daughter as I know I do as it seems no matter how much you do or how hard you try there's always a little voice in your head telling you how you could do better, how you could do more :(

Would it help for your wife to sit and think about what her Dad would have wanted, not her Dad as he is now, but the Dad that brought her up and had his own hopes and dreams for her. Because this is the voice that she should listen to... what would he have wanted for her?

I can also understand your perspective and can acknowledge that you are in an impossible position. I am only 25 and already I (although am ashamed to say) sometimes look forward to the day when I don't have my Mum to look after anymore. I imagine my life without having to care for her and can see how much easier it is going to be. Please don't think too badly of me, I'm only trying to say that I understand. We all have dreams for the future and plans for what our life would be like and caring for someone can come crashing down and take it all away.

What would I advise you? It is very hard to say. If your FIL moved in with you both would you be able to care for him up until his death? Sorry to be blunt. If yes then I take my hat off to you both, it isn't something I could do I'm not that strong. If no well then he is going to have to suffer another move again at some point. Would you FIL quality of life be massively improved by living with you? Would he be happy, content, safe even? Is your house safe for him, is it secure? Would you bring in outside carers to help him as well?

As someone who cares I don't think your wife will ever feel 'happy' with what you both decide. How can she? Her poor Dad is so ill and nothing she does is going to make him better. What I would strongly advise is making the decision together. The very last thing that you want is for her to blame you and see you as having stopped her Dad moving in. This has to be a decision made together. If he moves in it won't make your wife feel any better, yes it will remove and solve some or a lot of the current issues and concerns that you have but it will bring with it a whole new set of problems and heartache. The situation is ever changing.

Sorry I've probably been of no help at all waffling on like this! But your wife is so lucky to have such a caring and supportive husband, I wish you both well in whatever you decide.

Amy
Amy Don't feel ashamed, I feel like that at times, I just want my mum back.

Keith. I agree with every1 here so far k but am going 2 put devils advocate hat on .

If it was your mum in same situ as Fil (god forbid)how would you feel.
taken hat off now .

I know you want what is best 4 every1 but sometimes we all have 2 make compromises.

speaking frankly it's a bloomin tough life as a carer no matter how much you love the person and want 2 help. the only way your FIL will get the best care is if you your wife and BIL discuss things CALMLY. for you and your wife this will be hard but you both must try.

personally I think a very good facility either near you or your BIL may be the best option but that's only my view.
 

PostTenebrasLux

Registered User
Mar 16, 2010
768
London & Oxford
Dear "CaringDaughter" and Keith,

Firstly, please Daughter view yourself with greater faith - you obviously have low self-confidence as evidenced by your choice of screen name.

We are short of time/space - I will be bold.

Alzheimer is degenerative and the only current outcome is death. For me, losing someone for whom one cares deeply for or not is taking you through the grieving process beforehand, not as traditionally after death. May I recommend a wonderful book, a classic, "On Grief and Grieving" by Elisabeth Kubler-Ross (author of On Death and Dying) jointly with David Kessler (co-author of Life Lessons). You are presently mourning the loss of your father as you knew him, you are grieving before he actually has died and are angry with life. Once your father actually dies, you will feel differently, presumably grateful that he will be out of his suffering (and you free of the worry and distress of watching him deteriorate).

You are very fortunate in the compassion of your Keith who clearly writes with love, devotion, a warm heart and a clear head. Keith seems to be protecting you from yourself, even though you can't yet see his genuine intentions. He appears instinctive in pre-empting the family needs.

I agree with both of you in feelings, each one's views as valid as the other's. The previous posters have written amazing replies, compassionate, realistic and full of understanding, so rare such strength of "soundness" in one place.

Caring Daughter, things are going to become progressively much, much worse. It is frightening, Alzheimer is a cold and lonely place unless one reaches out. Caring for AD requires near superhuman strength in so many areas of skill and emotion.

The situation Keith describes is an age old dilemma, irrespective of it being related to AD in your particular case. I believe very strongly in compromise - a little of what you feel you should, a little of what you would like, a little of what your father needs, a little of what your husband proposes and a little of what the relatives need/desire.

I realise you live 200 miles from your father and that you work part-time. Would you be able to re-schedule your work so that you are free one week per month to go to your father in his future assisted living/care home and devote your time 100% to his needs? Could your brother contribute by housing you for that monthly week? You would "bond" again with your brother, understand each other's concerns better, include his little ones in the AD process and teach them to care for humankind and not be afraid when grandpa is not well. During that week, you could see to all the administrative care, appointments, chiropody, dental needs, assessments etc. Your brother would be included, see for himself that you care, be understood by you in his role of his father's carer and your sister-in-law would likewise be included and respected. It would give your brother and his family a week of lesser burden, though of course the preoccupation of AD never goes away. It could give your brother the opportunity to "let his hair down" for a few days, go out with his wife in the evening whilst you have the company of babysitting his children. You give him a break by being there, and you give your soul a break from guilt by being with your father for that week. You might prefer to do this on your own initially until you find your preferred method of care. Keith might drop you off at the station or drive you all the way and go home. In the meantime, Keith could look after your home, meet his chums, listen to his programmes and be himself as he recognises it. You get a monthly break from each other, get to do what each of you considers essential to your soul. BUT, Caring Daughter, do not think that Keith does not care or does not grieve too - he too is losing a father(-in-law) and it may be a good opportunity for Keith to spend more "quality time" with his own mother during that week. Then you might both feel you are tending to your parents' needs.

I have been so happily married for 27 years so far - 40 years is rare these days. Preserve what you have. Go on short trips together (Daughter, leave your mobile at home - Keith will have his switched on all the time), rekindle your own romance and nurture each other.

Do stay in touch CaringDaughter and you too Keith. Very rare are the husbands like you who wish the best for the ones they love... Hard to stand back and watch when you love...

All my very best wishes,
M
 

Amber 5

Registered User
Jan 20, 2009
890
60
Berkshire
Dear Keith and Caring Daughter!
We were in a similar position about a year and a half ago with my mum. I was adamant that I had to look after my mum as she couldn't manage on her own any longer. I thought there was no way she could afford to live in a Care Home and so it would have to be 'moving in with us'. My husband expressed his feelings of not wanting my mum to live here with us - in fact he half joked that it would either be her or him!

Although at the time, I was in torment as to what to do for the best, I knew that something had to change and I was the person in charge of making it happen. Not easy at all. I applied for Sheltered Housing in my area but she was turned down after they saw her medical report from GP. I enquired about Very Sheltered Housing in my area but she wouldn't be eligible as it was only being offered to people already living in the area. My husband also advised me there wasn't much point in her taking out a new mortgage for a house near here as it was too expensive and too much for her/us to manage. With a very heavy heart I began to look around for a suitable Care Home and found 'the one' that I thought she might just accept.

Trying to cut a long story short, she moved in last June to the Care Home (in the residential section) and it is like others above have said to you. She is safe, warm, well-fed, cared for and we can visit or take her out whenever we like. All the anxiety and stress of her living alone and trying to manage has been taken away. It took a little while for her to settle properly and it has taken me a long time to accept that it was the right thing to do - I don't think the guilt ever goes fully. But it has made our lives a lot calmer and we can still be a family and enjoy the odd weekend away together, in the knowledge that mum is safe with lovely people looking out for her.

With hindsight, it has been the right decision for us and I hope for my mum. It isn't easy because they still think they can be independent and you feel like you are taking that away from them. Also, it is sometimes difficult to know that they are happy, even though that is ultimately what you are trying to achieve for them. I've seen my mum look very unhappy whilst at our house when I had to pop out to collect my daughter who is still school age. I don't think she would actually have enjoyed being left alone in this house and not seeing anyone else. At least now she has company if she wants it, or can retire to her room when she wants. She has got used to the carers and is accepting of the other 'old' people around and will sometimes join in activities or go out on mini-bus outings.

I know how hard it is coming to terms with such a decision, and you have to certain that it is the right thing to do. None of us would have wished to be put in this position. I'm sure your FIL wouldn't have wanted your marriage to be affected by this, and at the end of the day, he's not getting any better and isn't able to manage living alone much longer.

It is definately worth considering long and hard the Care Home option. You might be pleasantly surprised and so might your FIL/Father. I never thought I'd get Mum to agree to her situation as it is now, but she was very willing in the end. I get a lot more smiles from her now than I ever did when she was still at home.

Wishing you all the best and hope that you can work this out.
Take care,
love Gill xx
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
Why oh why do people think that a care home is to be avoided at all costs? If it is the right care home with good staff and if the illness needs 24 hour care, then where is the problem? Who oh why do people think that it is a form of abandonment when an illness forces care to take place in a care home setting?

The person suffering from dementia will of course have anxiety and fear about moving to a care home. They fear change of any kind. They fear being cared for by strangers. They fear that they will be abandoned by their relatives. All of these fears are natural and understandable and need to be dealt with by reassurance, sensitivity, and love.

The family having to face the fact that their loved one going in care means they have very important work to do. Relatives need to put in the leg work to go out and find the right care home for their relative. They are not easy to find and some care homes they visit will cause them shock and horror. But they will find the right one if they do their work properly. They need to sort out the financial implications of the fees which will be incurred for the rest of the resident's life. They need to set up a routine which ensures that they still feel like an impoirtant part of the resident's life.

Residents of a care home need just as much love and attention from relatives as those living in any other situation. They need relatives to visit, to take an interest, to carry on CARING in fact!! The problems of caring will not magically go away by the relative being in a care home situation. There will be problems which will need to be addressed. The burden of care is still there, wherver the person is living!

Decisions regarding care at home or care in a care home setting are never easy and need many factors to be considered. But care homes are not places of abandonment. They are places where a resident should be able to live in relative comfort, security and peace, still knowing that they are loved very much.

xxTinaT
 
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ella24

Registered User
Nov 9, 2008
1,024
South Coast UK
Hi

another CH vote here - to be honest, it was never an option for my gran to move in with any of us - We all agreed that none of us had the emotional or physical resiliance to take her in - and she was craving company (and wandering out to find it).

Although my gran is the one with AZ, other family members have/have had progressive illnesses and perhaps this has helped in a weird way - we have been able to have the hypothetical chats about 'what if?' before it happens and every family member has agreed that they would not want to put any responsibility for full time care onto the others.

Perhaps you could help by doing some research into local CHs that would be right for your FIL, and filtering some out? I did research on my dad's behalf for my gran - and to be honest I'm glad I did, I think he would have been worried at some. Looking for the right CH is tough, and if you can find the best two or three and then show your wife how good they CAN be, perhaps she will be reassured. When you have the feel for it, you almost know as soon as you walk in the CH - it just feels right.

My gran is happy, clean (big issue that none of us could tackle her on), her incontinence is managed, and she has a feeling of independence (even though this is managed independence by the CH). Gran has the company she craved, plus personal space, and we have much better/enjoyable visits with her, and can take her out and about.

Even in a CH, there will still be things your wife can/will need to do for FIL - she wont stop 'caring', it will just have a different focus

Take care
 

ChristineR62

Registered User
Oct 12, 2009
1,111
NW England
Dear Keith and Caring Daughter

As carer for my Mum, who is now in a lovely care home less than 5 minutes' drive from me, I can say that I have sat on both sides of the fence. Mum was formally diagnosed with Alzheimer's round about January 2009, although like many others, she had been showing signs of it for some time beforehand. Her condition deteriorated through last year, and shortly before Christmas - I mean, just days - she went into the home where she has been ever since.

I struggled for months to work full-time, give Mum the care she needed, look after two small elderly dogs and try to keep the house going, At times I felt like screaming and did (in the kitchen, well away from Mum); most of the time, I felt like I was waiting for a heart attack or a stroke to get me. The stress was indescribable, and turned me into someone I now barely recognise. I cried buckets.

Then Social Services got involved, and organised a week's emergency respite at very short notice - the difference this made was incredible, from my point of view. Then, when Mum came back, within 24 hours I recognised that I couldn't go back to the way things had been - the champagne cork could not be forced back into the bottle, as the pressure had been relieved. A few days later, Mum went into another home, where she has been ever since.

And where she is warm, well-fed, well-cared-for and safe. She has company all day, and all night if she has a bad night. She is stimulated, and due to changes at the home, she will soon be able to go out for little trips with the carers. I visit her at least three times a week, and the quality of our relationship has improved no end. Every time I go, I tell her how much I love her. At the same time, I can have a life of my own now.

I've been where your wife is now; I am now where you want to be. I believe, from what I've read, that the time has come to find residential care for your FIL, so that you and your wife can now enjoy your life together. Find a good home close to you, so that visits can be made easily.

Whatever happens, I wish you all the very best, and I don't think you're being selfish at all - you're being a very caring husband to a very caring lady.

Love
Christine
xxx
 

Cjay

Registered User
Jan 26, 2010
122
durham
Hello Keith and Caring Daughter,
My MIL lived with us and as she grew older had physical problems as well as AL. I had children at home, and thier lives were put on hold to a certain extent, the family outings did not happen as we never had support to help us enjoy being a family. Eventually we had to place her in residential home, she loved it, people of her own age, activities etc. We were still able to take her out and visit, Quality time.
My Husband was then diagnosed with AL a year later, A right slap in the face that one! Most of my children ran for cover (don't blame them, they were hurting and scared)
After caring for him for several years, My Husband was placed in a home, Yes I feel guilty, but I chase that one away, I did what I had to do for my H's Safety and well being.
It took it's toll on me, and now 4yrs later I have had to rebuild a new life for myself.
I have two lives now, one for myself, and one for my Husband.
It can be done.
I would advise that to care you really have to want too, as resentment could build up and that helps no one. Neither of you want to get to the stage where you hate your FIL.
Yes I miss him everyday, every hour, but know, for us it had to be.
Hope this has helped
Cjay
 

Softy

Registered User
Jan 25, 2008
97
West Yorkshire
Hello Keith & Caring Daughter

When my Dad was first placed into care following a violent attack on my Mum I decided that I wanted him to live with me. My Mum could not longer care for him but I could, my Mum blocked me and as my Dad had been sectioned the authorities would not release him to my care without my Mums agreement. This was a hellish time in our family and could so easily have resulted in a split between my Mum and me. Fortunately my love for her is too great for that to happen and within a matter of weeks it was very apparent that Mum had been right. The level of care that my Dad needed were too great for me to cope with and no amount of love would have helped. Also my Dad would not have wanted me to deal with all of the daily care duties required I know this in my heart.

My Dad is gone now and the horrible memories of the illness fade over time. I thankfully do not have memories of changing him and the other dreadfull things that go with the later stages. I fed him held him even shaved him on a very regular basis but the other personal care no my Dad would not have wanted that ever I was his little girl.

The guilt monster will be there every step of the way as he is with all carers, there is no reason for him to be there as the amount of love that surrounds AZ patients is quite frankly amazing.

You both enjoy a long and peacefull retirement, you are not to blame for what is happending to your FIL place him in a safe caring home, visit & love him but most of all love each other.
 

Mameeskye

Registered User
Aug 9, 2007
1,669
56
NZ
Keith and Caring Daughter,

I have to say that I agree with all that has been written.

The guilt monster eats you alive, all the time trying to balance the needs of living with this disease. If it was just straightforward care then it might be different, but it is not. Depending upon how the disease progresses it can be physically challenging, psychologically damaging and can push you to the edge. No one deserves that and the problem is no one can tell you which way it is going to go.

A good Care Home can help deal with the negative facets that the illness throws up and let you enjoy the engagement you are able to give to your FIL. It also lets life go on.

Caring Daughter, I think the question to ask is would you expect someone to completely give up their life to care for you? I know that I would not expect it of my sons. What I would expect would that I would be safe and comfortable and my family would be happy. IS that not what your Dad would want too?

((((Hugs))))

And Keith, well done for caring. It is not an easy role and caring for a carer is just as hard I sometimes feel as caring for the patient. Often there is no one there to help with the silent screams that occasionally well up inside.

Love

Mameeskye
 

BeverleyY

Registered User
Jan 29, 2008
716
Ashford, Kent
Hi

Well, I am a daughter who does have her father living with us.

I know my husbands feelings are always something I worry about (and my childrens too).

Thankfully, my Dad (who has had AZ around 8 years) is still 'early - moderate' stages. He doesn't have any short term memory, asks the same things over and over again and you cannot reason with him.

He has no idea how to put the telly on, let alone touch the remote control. He can make a ham sandwich and a cup of tea, and that is the extent of his capabilities.

Fortunately, he is not incontinent and is able to shower/dress himself every day (albeit he doesn't think he needs soap because he is retired and therefore, not dirty enough):eek:

I always worry that my husband may resent this, after all he has only just turned 34 and has already 'put up' with this for 7 years now. Where has my husbands youth gone, let alone his retirement!

I know that the time will come when I am unable to cope and I know when that will be. Dad needing personal care will be one. I simply will not be able to wash/change my Dad:( Obviously, violence or inappropriate behaviour would also be a trigger signalling a move into residential care was necessary. If he began wandering then I would also need to make that decision because of his own safety.

However..... whilst I know when these points are, I would be devastated if my husband told me that my Dad had to go into care.

I'm just trying to be honest here and admit that if my husband forced me to do that, I would hate him for it despite the fact that I know it would probably be the right decision.

I cannot explain how the love for parents compares for the love we have for our partners. All I know, is that I love them all dearly and want what is right for them all. Sadly, a time will come that that simply cannot be.

I know, for me, that at least come the time that I have to put my Dad into care that I have done my best, for as long as I could and not having him here in these 'moderate' stages is simply just not option for me.

Whilst your FIL may be in that space already (needing washing etc..) and a home may be the best place for him, I think you have to guide your wife to see that rather than force her. Ultimatums never do any good I find - they only hurt people or even worse, push them away!

I have the most wonderful, supportive husband who has taken so much on already and I will forever be grateful to him that he loved me enough to take on the care of my parents with me. However, god help him if he ever chucks an ultimatum in the pot because whilst I love him, and would probably agree he is right, I would be very resentful that he had put that pressure on me in the first place.

If caring for your FIL is not an option... guide and persuade for sure, but don't force your wife to put him in a home. If she is anything like me, she wouldn't thank you for it.

Best wishes.

Beverley x
 

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