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Tossed and torn 
Started by Nouce
09 Feb 2015, 9:57 PM

Paul's strength is diminishing, his balance is failing, but he is getting more stubborn about wanting to do things alone. He doesn't like "help" around all the time. Today we had a big meeting with the hospice nurse and social worker, and three friends who help to stay with him. I felt so scared and torn. Pablo was angry and said I was not being reasonable. I was on the dark side with the hospice staff. The friends want him freer. And the day care is about to discharge him because his needs are too great for them. How much risk should I take to try to make him happy? Knowing I'll have to pick up the pieces afterwards.

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Reply by Xenia
10 Feb 2015, 4:26 PM

Dear Nouce:

My heart goes out to you having been through something similiar with John, my husband of 59 years.

On Christmas day he had a fall and from that time on he became stubbron, wandered around the condo most of the night and was generally unable to tell us what he wanted and what was wrong.  He was able to converse but was getting angry.

We were unable to figure out what was wrong and he was hospitalized after his fall and returned home and then he wanted to get out of the condo.  He became very angry and I had to call in family.  The next day the palliative nurse told us we had to get him into emergency and keep him there.  We pondered this as like you we had advise from so many different people. All suggesting we put him in care as we could no longer look after him.   

I cried as I had promised him that he would always be at home.  The next morning after a very terrible episode where we had the police come to our home as when I called for an ambulance they asked me what was wrong, I told him my husband had early dimentia and was being a bit abusive.  Three police cars arrived...it was a busy night so no ambulance and my daughter stayed with me.  In the morning the palliative nurse again called telling us to get him to hospital.

Do you believe in angels, I do, at 12:00 that day our doctor called and asked about John being in hospital, I broke down and told him what happened, handed the phone to our son in law, dr. called me back on and told me "You have to tell the hospital that you are unsafe and can no longer look after John.  He also told me these were the key words to get him into hospital and not to get the staff to convince me to take him home.  He also told me I ws a good wife, a good nurse and caregiver and there was no more I could do and I was not safe.

I cried and cried as I knew John was now going to have to be placed in a care facility, be cared for with different meds, etc. but I had to make the choice regardless of what our friends said, what friends want may not be good for him, not good for you and are you safe with him.  I know that sounds harsh but with dimentia things can turn on a dime, the sweet man I nursed changed in two days and I feared for him going out the door while I slept, down the stairs, falling and out into traffic in sox and pjs only.  

The difficult time is making the decision which we know in our heart is the correct one that it is time to let go and let the professionals look after our loved one when they are at the point they may hurt themselves and the caregiver

Our family had agreed during the first episode that we need to look for a care facility as I was having more trouble with John wandering, me not sleeping and all the extra stress was wearing on me.  I know friends and family want the best for their loved one but reality has to set in and look to the professionals, your doctor, nurses, etc and see what they can arrange for your husband.  Is it time for him to go to a care home, is it time for you to release him to their care, this is hard but if you as I did not do this we would become sicker and not able to care for them anyway.

I trust you will be able to resolve this very hard situation, the anger that is not Paul, the friends who want him freer to understand that this is a very sick man and needs some very good professional care that you are unable to provide at this time.

My love and thoughts are with as my arms surround you with a hug of comfort trusting that there is a resolution very soon for you and your husband.


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Reply by Nouce
10 Feb 2015, 8:12 PM

Thank you, Xenia,

Right now everything seems impossible and overwhelming, but your kind remarks and comments about this painful process are a light to my path.

Bless you,

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Reply by oldbat
16 Feb 2015, 3:07 PM

I'm so sorry to hear about Paul. Nouce.  Wasn't aware of this thread until now.

You are a kind, caring, brave woman.  You have looked after Paul with love and understanding but, as Xenia says, this may no longer be enough.  In order to stay strong for him, you must be good to yourself.  I know just how hard that must seem, but Paul needs your continuing strength, which you can only give by relying on the advice of professionals.

I'm not sure whether he is actually living in hospice or just gong to day care, which has now ended.  If he's not in hospice full time, this may be the time to place him there.  Yes, he may be angry and your friends may argue with you but, ultimately it is your decision, your responsibility.  You are carrying such a heavy load, Nouce, Please try to lighten it in any way you can. 

I do know how you feel.  Our situations are not comparable but, when Karl and I were told he had to go in to long-term care because I wasn't strong enough to cope with his disabilities, we were both devastated.  I cried for days, and still miss him terribly.  He was depressed for a long time, but has accepted his life there and  made huge strides in terms of temporary recovery. 

Be kind to yourself, too, Nouce.  You need respite and time to recoup your strength.  Strength that Paul needs more than ever now.  He will receive the kind of care in hospice that you cannot possibly deliver round the clock.  and you will receive a reprieve.  Please do welcome it.

BIG cyber hugs and prayers,


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Reply by Nouce
20 Feb 2015, 9:18 PM

Thank you, oldbat! We struggle along. It seems day care will work for sometime longer. I am so grateful for your care and wisdom.



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Reply by KathCull_admin
13 Mar 2015, 3:24 AM

Hello to you all,
Oldbat I hope you are able to take time for rest  -  this has been a tough week.

A new member, wits end started My feelings have scrambled.  As you are able, could I ask you to consider responding to her thread? As the title of this thread, I think she is feeling tossed and torn.

Thank you for considering and I hope you sleep well tonight.
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