My husband is in the later stages of Alzheimer’s

[Tuppeny]

Hi

My husband is in the later stages of Alzheimer’s. I recently placed him into a home as I have had breast cancer surgery and soon to start on radiation treatment.

I have cared for him since he returned from Vietnam with PTSD and high anxiety. He was an alcoholic, has been sober for 22 years.
After a sketchy work history he retired 33 years ago and we were given pensions from DVA.

life has had its ups and downs with him. I love  and care about him because he’s a human being not because I am in  love with him. Love went out of our relationship some 45 plus years ago after the children were born.

He thinks that he is coming home when I get well again.  He doesn’t really seem to understand about cancer and treatments and insists that he could look after me and himself and I know he can’t do either. My body might repair but I feel  that my mind is going to take a lot longer. I’m not used to displaying my feelings or telling someone face to face how I feel. I’ve learnt over the years to be strong and independent and keep how I am feeling to myself. 
So why  do I feel guilty about placing him into a home and when will this guilt go away. I don’t want to talk to him on the phone or in person, It’s the same conversation over and over about when he gets home. He is grabbing at straws to persuade me that he can be at home.  Comes up with all sorts of things.
He thinks he’s in respite care for a short time while I recover and that’s the way it was suggested for me to handle this. I really want to tell him the truth and I know that one day I will have to. I need to rid myself of this guilt. I know that I am doing the right thing for my own physical and mental health. Being  on my own for a few weeks has made me realise how run down I was and how much freedom I now have. Has anyone on here been in a similar situation and can tell me if I will ever wake up one day and not feel bad about what I have done. I keep telling myself that I shouldn’t feel bad after all that’s happened since he returned from Vietnam. Sorry I have rambled on a bit. I tend to write as I think and talk.

[geoff]

Hello Tuppeny, I'm sorry this is a situation I think we all dread, but if you do have Alzheimer’s then perhaps we might not know, however, I do know of someone in the exact same position, although they aren't married, but lived together, and at first it took her a long time to decide that he should be in a nursing home, and the final decision was made when he assaulted her.

What you have done is for the best, just as what my friend did, whether the person with this illness doesn't want to, but they don't want to be at home either, and tend to wonder off if they had the chance, not that they realise what they're doing and any medication they need to take, the staff at the nursing home are able to administer this, rather than you having trouble.

My friend has now come to terms with this and is now far more relaxed and can do whatever she wants to do and would never have him return to the house, because her anxiety and frustration would skyrocket, now she is a relaxed person and has no guilt at all.

Please realise that nursing homes are the best places for people suffering from Alzheimer's, it's just too much for you to handle, plus now you have to look after yourself/

Geoff.

Life Member. 

[Juliet_84]

Hi Tuppeny,

You have endured an enormous amount in your relationship and your life, you have been there through alcoholism, PTSD and extreme anxiety and also cancer treatment for yourself, any one of those things would break most people. And now your husband has Alzheimer’s disease and has been placed into respite care. The reality is that Alzheimer’s is a degenerative disease and he will deteriorate over time. He may want to come home but you will be the one caring for him and that is a lot to put on a person. After all that you’ve endured, you are understandably feeling lighter now that you are out from the weight of all these things and are looking forward to life with a renewed interest, which I am so pleased for you about 🙂 you can spend your life worrying about other people and always putting yourself last or realize that you only have one life and you need to make the most of what you have left. If he remains in respite care, you can visit him often and he will be well cared for and you can continue to experience life, which we should all be free to do. The alternative I imagine is a lot of regret and resentment over a life half lived 

[Summer Rose]

Hi Tuppenny

I think you’ve received some great responses, so I won’t repeat the key messages. I would like to add though that, while it’s entirely your decision, you may not ever need to tell him the truth.

We handled my father-in-law’s admission to his nursing home in the same way as you based on the advice we received. He also has Alzheimer’s disease.

He initially continually asked about going home and was making lots of phone calls to his wife and adult children. We (the entire family) decided to tell him there were renovations happening at his family home so “respite care” would unfortunately last a bit longer than originally planned.
Over time his requests stopped. He forgot the phone numbers and ceased being able to operate a phone. It was terribly sad to watch the disease progression and gut-wrenching to feel relief when he stopped asking.

I understand your guilt—I felt it, too. But I also knew that he was where he needed to be. My mother-in-law could no longer care for him (she had health issues too) at home. I realised that it was kinder not to tell him the truth, as he would never have been able to understand.
Please know that you are not alone with your conflicting emotions, particularly given that while he is your husband the love you once shared is long gone.
But you are doing the right thing for him and for you. Period.
I’m really sorry this is so hard on you. 

Kind thoughts to you

[therising]

Hi Tuppeny

I feel for you so deeply as you struggle with the sense of guilt you face. While you've faced so much over the years in regard to your mental and physical health and your husband's, the sense of peace or freedom you're feeling in some ways is completely understandable.

I found I could never manage guilt terribly well until the day I came to redefine what guilt means to me. I scrapped the dictionary definition and defined it as being that which asks me 'Who do you wish to be from this moment onward?'. For example 'I wish to be someone who takes better care of myself (through less stress) while also making sure others are being cared for in they ways they need to be'. This can involve them being in care. So, you could say guilt is a rise to greater consciousness. Sometimes the feeling of guilt can come with the need to delete certain mental programs that have been put in our head at some stage or stages in our life. I offer an example when I consider my 88yo dad having gone to live in an aged care facility...

With my dad in the progressive stages of Alzheimer's, he's asked me on a number of occasions when he'll be moving back to his apartment (where he was living on his own). I never tell him he's now permanently living in the place he's in, I simply point out the facts, 'Dad, given the amount of falls you were having and the fact you weren't eating enough/starving yourself, here is the best place to be, with 'round the clock care and service. If anything happens through the night, you know someone we be in to help you in a matter of minutes plus the food here's fantastic'. I'll also start conversations about the staff and residents he really likes. Stuff like that. I never say he's not moving back. I feel so sad for him at the same time, given the lifestyle he's lost. I grieve for him. With my brother and myself having enduring power of attorney, what he doesn't know is we've sold his car (which he loves so very much) and we're in the process of selling his apartment. Btw, when someone sticky tapes a note to their dashboard reminding them to use the brake if need be, you know it's time for them to stop driving. I've had do delete so many mental programs in my head, which has been incredibly hard to do. Whether our mental programs dictate

• Loyalty above all else, to parent/spouse/friend etc
• Never lie or omit the truth when it comes to someone you love
• Caring more for our self than others is wrong
• Going behind a loved one's back is an act of betrayal

etc etc, it can be such a torturous process, getting rid of those programs under certain circumstances. It can really mess with you. We can't believe 'I'm a horrible person, I'm disloyal, I'm uncaring etc'. The belief systems that replace the ones we can no longer work with have to be highly productive ones, for everyone's sake. When we're suffering through great mental dis-ease or unease, we can't afford for that to physically manifest. Tuppeny, ease is a part of your cancer treatment, whether your husband recognises that or not. Take good care of yourself and trust in what offers you some sense of peace/ease as you continue your treatment. I wish only the best for you, including a full recovery.

[Tuppeny]

Thank you everyone for your support and advice, much appreciated.