I have been caring for my husband at home for the past four years or so but found I couldn't go on any longer. I was close to breaking down, both physically and mentally. He has now gone into a care home, and I am overwhelmed by guilt. He doesn't accuse me of abandoning him, but doesn't understand why he can't come home or why we can't be together every day. The home is excellent, with kind and caring staff, but is several miles from me and, as I can no longer drive and there is no public transport in the area, I am dependent on friends to take me to see him. My friends are kind but I feel guilty about depending on them, as well as feeling guilty about " putting my husband away", as it were. I know he's better where he is, with skilled and kind staff to look after him, but being apart is breaking my heart and his, and I don't know where to turn for comfort. Any wisdom or advice from fellow sufferers would be so welcome. Bless you all.
Care Home Guilt
- Thread starter Bakersgirl
- Start date
It is very difficult isn't it?
My wife went into care late September after a urinary infection, whilst on 2 weeks respite care, knocked her for six. along with her mobility. I had cared for for over 6 years so it was a sad but necessary decision.
My situation was different in that she had withdrawn into herself very much (though in a happy place) and she had problems communication. She still seemed to recognise us and the staff took very good care of her. She never showed signs of wanting to come home (was at the latter stages) but I hated leaving her there and coming home to the empty house.
I did find that after a few weeks, I could sort of switch off once I'd left the home - I guess I shoved those thoughts into a "box" in my brain? It was only when I went back next day that I opened it up again so I more or less coped.
Sadly another infection a couple of weeks before Christmas (our first one apart) saw a dramatic deterioration and she passed away on the 19th Jan - her funeral is tomorrow.
I hope you will both get used to this new situation and you are able to feel less guilty. As carers, we willingly give up so much to care for our loved ones and we rarely make time for ourselves.
Best wishes
Phil
Thank you, Phil, for this. Knowing that someone understands the feelings is a comfort. I am so sorry to hear of your wife's death, but hope you will be comforted by memories of happier times and of the love you shared.It is very difficult isn't it?
My wife went into care late September after a urinary infection, whilst on 2 weeks respite care, knocked her for six. along with her mobility. I had cared for for over 6 years so it was a sad but necessary decision.
My situation was different in that she had withdrawn into herself very much (though in a happy place) and she had problems communication. She still seemed to recognise us and the staff took very good care of her. She never showed signs of wanting to come home (was at the latter stages) but I hated leaving her there and coming home to the empty house.
I did find that after a few weeks, I could sort of switch off once I'd left the home - I guess I shoved those thoughts into a "box" in my brain? It was only when I went back next day that I opened it up again so I more or less coped.
Sadly another infection a couple of weeks before Christmas (our first one apart) saw a dramatic deterioration and she passed away on the 19th Jan - her funeral is tomorrow.
I hope you will both get used to this new situation and you are able to feel less guilty. As carers, we willingly give up so much to care for our loved ones and we rarely make time for ourselves.
Best wishes
Phil
I can't really offer any wisdom or advice but I did want to say how I understand what a very sad situation you find yourself in and the guilt you feel is something that probably most of us suffer, whether we are caring at home or our spouses/partners are in a care home. I guess the alternative to the care home would be to have your husband home and have professional carers at home or regular respite. It's a shame that he's so far away that you can't visit more regularly as that might help. I hope others are able to offer you some advice.
This is my first posting so hopefully it works.
To Phil, I am sorry for your loss, and as Bakersgirl said I also "hope you will be comforted by memories of happier times and of the love you shared". You looked after her for many years and I am sure that it was not easy.
To Bakersgirl, I am sorry for the guilt that you are experiencing but I am sure that you made the right decision. There just comes a point in time when we can no longer adequately care for our loved ones and we need to make the decision that you have made. In my case I have been looking after my wife for about 5 years now. She is confined to a wheel chair so that adds an extra challenge, along with the dementia. From time to time I will take her to a personal care home for respite and she doesn't understand why she can't stay at home and look after herself. She also asks if she can go home when I am there so I understand some of the guilt you are experiencing. And yes, I feel like I am abandoning her. All normal reactions.
You indicate that it is an excellent care home with kind and caring people so he is getting excellent care and you shouldn't feel guilty. It's just impossible for you to care for him any longer. Remember that you lovingly cared for him for four years or so, and you just can't anymore.
I know that in the next few year's I will also have to place my wife in a care home. I will miss her, feel guilty, but will know that it was the right choice.
Please take care and know that you made the right decision for him.
To Phil, I am sorry for your loss, and as Bakersgirl said I also "hope you will be comforted by memories of happier times and of the love you shared". You looked after her for many years and I am sure that it was not easy.
To Bakersgirl, I am sorry for the guilt that you are experiencing but I am sure that you made the right decision. There just comes a point in time when we can no longer adequately care for our loved ones and we need to make the decision that you have made. In my case I have been looking after my wife for about 5 years now. She is confined to a wheel chair so that adds an extra challenge, along with the dementia. From time to time I will take her to a personal care home for respite and she doesn't understand why she can't stay at home and look after herself. She also asks if she can go home when I am there so I understand some of the guilt you are experiencing. And yes, I feel like I am abandoning her. All normal reactions.
You indicate that it is an excellent care home with kind and caring people so he is getting excellent care and you shouldn't feel guilty. It's just impossible for you to care for him any longer. Remember that you lovingly cared for him for four years or so, and you just can't anymore.
I know that in the next few year's I will also have to place my wife in a care home. I will miss her, feel guilty, but will know that it was the right choice.
Please take care and know that you made the right decision for him.
Hi Bakersgirl, we all have that pesky guilt fairy sitting on our shoulder, 24hrs a day over something we did or said and wish we hadn't. But I think the biggest guilt feeling must be when it gets so so bad and we cant do it anymore so for our sanity and for a better life for our OH we have no choice but to put them somewhere safe, and we know they will be well looked after by a team of people instead of us doing it 24/7. My hubby is going to respite next week, hes agreed at last, I am completely burnt out and at the end of my tether. My daughter is trying to convince me that it would be kinder to him and a life saver for me to push to make it a permanent stay. BUT that pesky guilt fairy is sitting there telling me how selfish I am and I should be caring for him. So yes, I really feel for you bakersgirl, but you must be cruel to be kind, but your not being cruel your being kind because he will soon be settled and content and you will eventually be in a more happy and healthy place and have quality time to spend with your OH, I've decided I'm going to push for permanent care, but not sure of that's accepted if there just therenfor respite. The thought of him coming home terrifies me it's so difficult now.. good luck bakersgirl and I hope your feeling better soon..
It is very difficult isn't it?
My wife went into care late September after a urinary infection, whilst on 2 weeks respite care, knocked her for six. along with her mobility. I had cared for for over 6 years so it was a sad but necessary decision.
My situation was different in that she had withdrawn into herself very much (though in a happy place) and she had problems communication. She still seemed to recognise us and the staff took very good care of her. She never showed signs of wanting to come home (was at the latter stages) but I hated leaving her there and coming home to the empty house.
I did find that after a few weeks, I could sort of switch off once I'd left the home - I guess I shoved those thoughts into a "box" in my brain? It was only when I went back next day that I opened it up again so I more or less coped.
Sadly another infection a couple of weeks before Christmas (our first one apart) saw a dramatic deterioration and she passed away on the 19th Jan - her funeral is tomorrow.
I hope you will both get used to this new situation and you are able to feel less guilty. As carers, we willingly give up so much to care for our loved ones and we rarely make time for ourselves.
Best wishes
Phil
I am so sorry Phil, it is such a tough time, I hope things go as smoothly as possible at this sad time. My kindest wishes to you and thank you for your presence on here. Alice
Dearest Bakersgirl, I feel for you so much. I am on the brink of having to make the same decision, it is the hardest thing ever. I know it seems easy to say but try not to let guilt sap your energy.
I am sure that like me and others on here the decision is really the only option, I have explored everything else, to continue at home would need far more help than most could afford long term. Even if one could get suitable people and the space to house them.
My husband has just had respite, I feel it did him good just having more people around yet the peace of his room or a quiet corner, you both need time.
Like you I am isolated with no transport. This really impound our difficulties doesn't it? People with cars at hand take travel anywhere for granted. I hope you feel easier soon. It is early days give it time to adjust. Xxx
It really is such a difficult decision and also when is the right time to consider a care home. My partner is becoming so angry, so negative about everything and moody, he can switch moods in the blink of an eye. So I wonder if he's too angry for a care home and will he calm down in the future, so I'll keep going for now but it is very hard to live with someone when they are like this. It seems like he's deteriorating very rapidly after 4 years of slow decline.
Dear Fellow Carers,
I am so grateful to all of you who responded to my post with your own stories and your comforting words. This forum is such a boon to those of us who are struggling to deal with this terrible disease in those we love. My husband seems more settled now, I'm glad to say, and hasn't asked to come home for a few weeks now, which is a great relief. I feel that I have made the right decision for him, and try to draw comfort from that. But the guilt never seems to go away. Blessings to all of you.
I am so grateful to all of you who responded to my post with your own stories and your comforting words. This forum is such a boon to those of us who are struggling to deal with this terrible disease in those we love. My husband seems more settled now, I'm glad to say, and hasn't asked to come home for a few weeks now, which is a great relief. I feel that I have made the right decision for him, and try to draw comfort from that. But the guilt never seems to go away. Blessings to all of you.
Hi @Bakersgirl , Im glad your husband has settled - it is a bittersweet thing. Try and "repackage" what you term guilt (what is there to be guilty of? None of it is your fault) as sadness. Sadness and grief for all the lost things and that it has come to this.
Hi bakersgirl, I'm so relieved for you that your husband seems settled, and that you must feel a wee bit better about things. Hopefully each day will get easier for you, you will be able to spend quality happy time with him now,. I'm talking to someone tomorrow about my hubby staying at respite full time now. Whenever I speak to someone at carehome they say hes really settled and interacts with staff and joins in with stuff, but hes always off with me when I visit him complaining about everything and wants to climb out the window in his room, but that's just with me, hes smiley a d chatty to my daughter and the residents. So stay strong bakersgirl, and keep telling yourself YOU HAVE done the right thing for you and your dear husband.
Yesterday I was talking with friends who finally accepted that his Mum was no longer safe at home by herself. She spent two weeks in respite care last September but they made a rod for their own backs by going to visit her every day “Because she was used to us going in to see her everyday at home.” Of course she got progressively more distressed every day when they tried to leave her and at the end of the fortnight said “I am never going back to that dreadful place again!” This was the Care home that The Banjoman was in and while not perfect, I was happy with the care he was receivIng.
After Christmas she agreed to go into a different residential home and again they started visiting regularly until the place restricted visitors due to a virus outbreak. When they could get back to visiting she was incensed that they had “Left her” in this awful place. Speaking with them yesterday he was feeling guilty and said thatMum was still not very happy at the home, complaining about everything, so I asked what she was like when they aren’t there? Other people have visited and had a “delightful time” with her and staff and other residents have said that she eats her meals and joins in with activities. I suggested that it might be better for both her and them if they cut down on the visits each week as she is only objecting to being in the home while they are there! Hopefully they will star to taper off the visits in the coming weeks.
After Christmas she agreed to go into a different residential home and again they started visiting regularly until the place restricted visitors due to a virus outbreak. When they could get back to visiting she was incensed that they had “Left her” in this awful place. Speaking with them yesterday he was feeling guilty and said thatMum was still not very happy at the home, complaining about everything, so I asked what she was like when they aren’t there? Other people have visited and had a “delightful time” with her and staff and other residents have said that she eats her meals and joins in with activities. I suggested that it might be better for both her and them if they cut down on the visits each week as she is only objecting to being in the home while they are there! Hopefully they will star to taper off the visits in the coming weeks.
Gosh yes banjomansmate. that's exactly how my hubby is, I must admit when he was in respite early last year and in rehab last year I was guilty of visiting too often, and he was nasty to me at times then. So I used to dread seeing him but went out of guilt him being there. I'm not visiting as much as its further away so bus then taxi. But I've been told not to visit too much, so I feel OK with it now. He's great with everyone else just not me. I'm keeping fingers crossed for a good outcome this coming week, for hubby and me.
@Bakersgirl, it's not my partner but my mother I had to place in a specialized home but I can completely relate to the feeling of guilt. I want to point out a few things:
I knew that point had come for my mother and even though it made me physically sick with worry, I went ahead with it and the transition was just fine - the fear of fear was worse than the real deal if you see what i mean?
If you need to reframe it - reframe it by seeing it for what it is: you're putting yourself in a position to help him MORE, not less, by outsourcing the admin of certain mundane things to professional, while YOU can work your magic as a loving wife during your visits.
You actually protected and increased your ability to care for him. You did well.
- Firstly, don't go about thinking others will see you as 'the woman that put her husband away'. I seriously doubt anyone thinks this of you, it's probably a case of projecting because of your overwhelming sense of guilt (which is actually sadness like another posted pointed out). But even if they were, keep in mind this is a very misunderstood disease, made worse by an ignorant media and hollywood movies that only care about the $$$. You have NOT done anything wrong, to the contrary...
- ... you've done the RIGHT thing. I know it's heart wrenching but should this disease affect my wife one day (let's hope to God it's not), I 100% would place her in a home after experiencing what I experienced with my mother. There is NO choice - and the option to keep the person suffering at home is not really an option, and has the potential to have disastrous consequences (accidents, illnesses, and damage to your own mental and physical well being).
I knew that point had come for my mother and even though it made me physically sick with worry, I went ahead with it and the transition was just fine - the fear of fear was worse than the real deal if you see what i mean?
If you need to reframe it - reframe it by seeing it for what it is: you're putting yourself in a position to help him MORE, not less, by outsourcing the admin of certain mundane things to professional, while YOU can work your magic as a loving wife during your visits.
You actually protected and increased your ability to care for him. You did well.
