Hello

[Andrew72]

Hi All, I have been a long time browser on here but thought it was time to register. A brief guide to my situation:
My father in law passed away a few years ago and my wife wanted to help look after her Mum who has dementia. We trialled her at our house but it was too much for the MIL so we made the hard decision to sell up and move in with the MIL, building an extension on the house to accommodate our family.
I was happy to do that as family is very important but sometimes I feel like we have taken on too much. We could quite easily put the MIL in a home but we are doing our utmost to keep her at home for as long as possible.
We have a carer who comes every morning to get the MIL washed/dressed/fed and make sure she takes her medication and because of our work commitments we have a sitter who comes and sits with her during the days we are both out at work. We also have 3 wonderful sons who help look after her,
In the last year things have got progressively harder and I sometimes selfishly regret taking this on as it has effectively put our own lives on hold whilst we care for her and cope with the ever increasing issues which confront us. Is it normal to feel like this?
The MIL is in late stages of dementia and doesn't recognise anybody anymore, she doesn't have any moments of clarity anymore and it is an uphill task getting her to eat (She will never say no to a coffee though ) She has started having lots of accidents, soiling herself or just going to toilet anywhere, including in front of the toilet instead of on it. She is still mobile but she tends to just go up and down the stairs all day long talking to herself in the third person and asking to go home. There are other siblings but one lives out of the country and the other hasn't seen her in over a year and previously only came to see her on Birthday/Christmas and Mothers day, I must admit I sometimes feel a tinge of jealousy that he can just walk away from it.
That is my story and I realise how selfish I must sound but I do what I can to support my wife during this increasingly difficult situation. I have good days and bad days when it comes to the MIL but I am doing the best I can.
Does anybody else in a similar situation look forward to going to work? I regularly work extra hours just to delay going home and as I am typing this it sounds horrible but it is pointless lying about it when I came on here to vent a little bit.
Finally and probably the worst bit, I sometimes feel it would be better for everyone if she just passed away, it's horrible to say this out loud but in my eyes she has no quality of life anymore, she doesn't recognise anyone, she is trapped in her own little world and her day is made up of going up and down the stairs and talking to herself in third person, she regularly chats to herself as if she was one of her friends(that was difficult to get my head around at first). I understand all of this is not her fault and she herself would be mortified if she could see what she was like now, she was such a house proud woman without anything out of place and now she is far from it.
Despite all the above I will continue to support my wife and MIL throughout this phase of our lives and thankfully we have a very strong relationship and will get through this at the other side.
Thank you for taking the time to read this and I apologise for me selfishness.

 

[SAP]

Oh my goodness @Andrew72 this is not selfish at all. You and your family have made a decision for all the right reasons but dementia is a devastating disease and many many carers get to the point where they are pouring from an empty cup. If you don’t share how you feel with someone then what will you do with all those bottled up emotions.
I read every word and totally get what you are saying. I would totally be looking for ways to keep out of the house and not feel like going back. Honestly this is completely understandable. I think many carers have wished the journey would come to an end, I know I have.
Maybe you can’t share this with your wife but please do come on here to vent,it’s a safe space.

 

[Grannie G]

Welcome @Andrew72

I think this is the only place where you can tell it as it is without fear of judgement or criticism.

What you have taken on has now become too difficult to manage without affecting your quality of life more than you could ever have anticipated.

I`m not sure if there is a solution for you, unless you are ready to consider residential care. There is no harm in this. many of us have made what has been the most painful decision ever and it has turned out to be a positive experience.

It might help to discuss this with your wife. Does she know you are working later to avoid going home?

 

[leny connery]

truth to tell, we carers do sometimes have all those feelings you describe. And the guilt for even feeling it!!!! It is worse when the PWD is your other half. Parents are different I think. I agree with Sylvia. at some point you need to accept it is the end of the (home caring) road. nobody puts their loved one to care with a light heart, but it needs to be recognised that it is the best for everybody concerned. I dread the time I must do it, but also the time leading to this decision.. it is not if, it is when! I dread the loneliness, the guilt, the pity I would feel for him, the cost!! For now,, I take one day at a time. Do not feel bad. You have done good for MIL and your family

 

[Ellie2018]

One of the great things about this forum is that so many people get it and feel the same way, we assume that what we are feeling is wrong but it’s natural. I went for CBT to deal with it and they said they can’t help because CBT is designed for intrusive, unnatural thoughts and my thoughts were entirely natural given the situation! It doesn’t help physically but psychologically it helps to know how you feel is understood. I do wonder if as hard as you have tried, now is the time to consider residential. From what I have seen and read, it can often be better for them and you. I have red lines for my husband and the toilet problems you’re having are one of them, the other being physical aggression. As for the wishing she was no longer here, it would be a godsend if my husband went some natural way because this is horrible for him. He has been banned twice from day care and I feel Monday I’m getting a final call, because of his aggression - shouting and getting too close, yet he was the nicest, kindest many you could wish to meet and I know from previous conversations he would not want to live this way. I hope seeing that many of us feels the same helps you in some way.

 

[Confabulation humor24]

Hi

 

[Springiscoming]

Hi All, I have been a long time browser on here but thought it was time to register. A brief guide to my situation:
My father in law passed away a few years ago and my wife wanted to help look after her Mum who has dementia. We trialled her at our house but it was too much for the MIL so we made the hard decision to sell up and move in with the MIL, building an extension on the house to accommodate our family.
I was happy to do that as family is very important but sometimes I feel like we have taken on too much. We could quite easily put the MIL in a home but we are doing our utmost to keep her at home for as long as possible.
We have a carer who comes every morning to get the MIL washed/dressed/fed and make sure she takes her medication and because of our work commitments we have a sitter who comes and sits with her during the days we are both out at work. We also have 3 wonderful sons who help look after her,
In the last year things have got progressively harder and I sometimes selfishly regret taking this on as it has effectively put our own lives on hold whilst we care for her and cope with the ever increasing issues which confront us. Is it normal to feel like this?
The MIL is in late stages of dementia and doesn't recognise anybody anymore, she doesn't have any moments of clarity anymore and it is an uphill task getting her to eat (She will never say no to a coffee though ) She has started having lots of accidents, soiling herself or just going to toilet anywhere, including in front of the toilet instead of on it. She is still mobile but she tends to just go up and down the stairs all day long talking to herself in the third person and asking to go home. There are other siblings but one lives out of the country and the other hasn't seen her in over a year and previously only came to see her on Birthday/Christmas and Mothers day, I must admit I sometimes feel a tinge of jealousy that he can just walk away from it.
That is my story and I realise how selfish I must sound but I do what I can to support my wife during this increasingly difficult situation. I have good days and bad days when it comes to the MIL but I am doing the best I can.
Does anybody else in a similar situation look forward to going to work? I regularly work extra hours just to delay going home and as I am typing this it sounds horrible but it is pointless lying about it when I came on here to vent a little bit.
Finally and probably the worst bit, I sometimes feel it would be better for everyone if she just passed away, it's horrible to say this out loud but in my eyes she has no quality of life anymore, she doesn't recognise anyone, she is trapped in her own little world and her day is made up of going up and down the stairs and talking to herself in third person, she regularly chats to herself as if she was one of her friends(that was difficult to get my head around at first). I understand all of this is not her fault and she herself would be mortified if she could see what she was like now, she was such a house proud woman without anything out of place and now she is far from it.
Despite all the above I will continue to support my wife and MIL throughout this phase of our lives and thankfully we have a very strong relationship and will get through this at the other side.
Thank you for taking the time to read this and I apologise for me selfishness.

You are not selfish and all these feelings are completely normal, in my opinion!
The brother that barely visits - would he be amenable to a conversation in which you explain that although you have taken this on willingly and will see it through, you would appreciate a bit more support? For example he comes to stay for a few days while you, your wife and family have a short break? Just an idea!

 

[maggie6445]

Hi All, I have been a long time browser on here but thought it was time to register. A brief guide to my situation:
My father in law passed away a few years ago and my wife wanted to help look after her Mum who has dementia. We trialled her at our house but it was too much for the MIL so we made the hard decision to sell up and move in with the MIL, building an extension on the house to accommodate our family.
I was happy to do that as family is very important but sometimes I feel like we have taken on too much. We could quite easily put the MIL in a home but we are doing our utmost to keep her at home for as long as possible.
We have a carer who comes every morning to get the MIL washed/dressed/fed and make sure she takes her medication and because of our work commitments we have a sitter who comes and sits with her during the days we are both out at work. We also have 3 wonderful sons who help look after her,
In the last year things have got progressively harder and I sometimes selfishly regret taking this on as it has effectively put our own lives on hold whilst we care for her and cope with the ever increasing issues which confront us. Is it normal to feel like this?
The MIL is in late stages of dementia and doesn't recognise anybody anymore, she doesn't have any moments of clarity anymore and it is an uphill task getting her to eat (She will never say no to a coffee though ) She has started having lots of accidents, soiling herself or just going to toilet anywhere, including in front of the toilet instead of on it. She is still mobile but she tends to just go up and down the stairs all day long talking to herself in the third person and asking to go home. There are other siblings but one lives out of the country and the other hasn't seen her in over a year and previously only came to see her on Birthday/Christmas and Mothers day, I must admit I sometimes feel a tinge of jealousy that he can just walk away from it.
That is my story and I realise how selfish I must sound but I do what I can to support my wife during this increasingly difficult situation. I have good days and bad days when it comes to the MIL but I am doing the best I can.
Does anybody else in a similar situation look forward to going to work? I regularly work extra hours just to delay going home and as I am typing this it sounds horrible but it is pointless lying about it when I came on here to vent a little bit.
Finally and probably the worst bit, I sometimes feel it would be better for everyone if she just passed away, it's horrible to say this out loud but in my eyes she has no quality of life anymore, she doesn't recognise anyone, she is trapped in her own little world and her day is made up of going up and down the stairs and talking to herself in third person, she regularly chats to herself as if she was one of her friends(that was difficult to get my head around at first). I understand all of this is not her fault and she herself would be mortified if she could see what she was like now, she was such a house proud woman without anything out of place and now she is far from it.
Despite all the above I will continue to support my wife and MIL throughout this phase of our lives and thankfully we have a very strong relationship and will get through this at the other side.
Thank you for taking the time to read this and I apologise for me selfishness.

You're not selfish. You are a lovely supportive husband and son in law . My sentiments have been expressed by others. X

 

[Confabulation humor24]

My husband has been going downhill for the last three months, and I still feel shocky. He started with this Nov. 10th. Now He's delusional. Last night he was obstreperous. I do have my adult single son to help me , as he lives with us. During the weekdays though, it's "tag" your it. I'm devastated, The wonderful man I married 43 yrs ago is gone. I don't know this person. Thank you for listening.

 

[SeaSwallow]

Hello @Confabulation humor24 and welcome to the Dementia Support Forum. I am so sorry to read about your husband and how he has changed, it must he so hard for you. You will always find someone on here to listen to you and to answer any questions that you may have. Now that you have found us you might find it useful to start a thread of your own in the - I have a partner with dementia - area. There you can tell us a bit more about yourself, talk about how you are feeling or just let off steam. I have attached a link below.

I have a partner with dementia

This forum is for people with a partner or spouse with dementia.

forum.alzheimers.org.uk

 

[maisiecat]

Hi @Andrew72 , well you are sounding like a saint to me. You have done your very best and supported your wife. The question is if your MIL doesn't recognise you what benefit do you feel she gets from being at home?
I know the incontinence issues are a killer and I found it so difficult when my husband started peeing in the waste paper bins. He also peed all over the floor in an average day I mopped toilet floors a dozen times.
Also the better if she passed away is something so many of us feel. I don't think its wrong to feel that,its a brutally cruel disease and it damages not just the person but the people helping them.
I suggest you have a chat with your wife about a home for your MIL and see if she is still utterly opposed,it may be both of you are waiting for the other one to bring it up.
My husband's dementia home is great,they have settled many of his behaviours and are kind and warm and friendly to both of us. It has enabled us to reach a time of peace but he reamains utterly delusional and the wrong word triggers him. He will not be coming home for us to relive the same nightmare.

 

[Lawson58]

You and your family have been absolute stars in the care you are providing for your MIL.

Sadly it sounds as if the time has come to consider moving her into care. She has obviously reached a stage where she is needing a lot of care and really, it is never going to get better, only worse so this question will arise at some stage.

The situation is putting you under stress so how is it for your wife and those great sons of yours? Dementia is never about one person, the one with the disease. It impacts hugely on all of those who are involved with caring or are on the sidelines learning that care can be a wonderful lesson in giving with no reward.

So what are your thoughts about the future in both the short term and the long term? Those thoughts need to be expressed and sorted with your wife and you know, she might surprise you.

When faced with the responsibility and the commitment of caring for a person and with advancing dementia,, do you know what your sons really feel about caring for MIL in the long term?

Perhaps your presence on this forum is a nudge that you should start getting things in place.