Dear ingelo,

It is hard to see our loved ones failing and in less than optimal circumstances.......

For me the Serenity Prayer offers a guide for what you are speaking about...once we ask ourselves is there something more I could do here to improve things? or is this something I need to practice acceptance about...maybe everyday......if you CAN change something then seek the courage to do so, if truly not, seek the courage to accept what is a painful circumstance....

You probably are suffering from a combination of caregiver depression and grief depression from your mom's death......do you think counseling, a Bereavement Support Group, a Caregiver's Support group...possibly medication, or any combination of these would be a help?

Is it helpful to you to get away for a few days, if so would a brief mini-break lighten your feelings?

This is a hard path, but d try to give yourself good care and all the help that's out there....friends, lunch or dinner out, a movie, someone you can really talk with.....what ever lightens your burden...

peace and comfort to you....

I think you feelings are normal. But you can control how you let them affect you. You didn't cause your husband's condition so why should you feel guilty?

How about going for some counciling? Maybe a few sessions will help you understand your situation and accept your life as it is now. I think one of the biggest mistakes caretakers make is not accepting that life has changed and we need to change along with it.

First, let me say that I can relate. I lost my Mum in March and it's hard. I still have my DH at home but hope to get him somewhere within a few months-we'll see.
I KNOW I will feel guilty, but here's what my Dr. told me. See if this helps you.
He said:"You Will feel guilty but you shouldn't let it last. He Will get worse and you would not be able to cope by yourself (I don't have family here at all, either). He said that full time care is best for him and something I can not provide as just one person. The staff has 8 hour shifts for a reason and you are on a triple shift having him home. NO human can withstand that for long. So release the guilt and be glad he has proper care."
These words may help you. My Dr. has helped me so much.

Thank you to all 3 of you for your wise words.
I had been going to a caregiver group but stopped as I was not finding it very helpful. Maybe I will try again.
My doctor has been very helpful and has put me back on a mild anti-depressant, mostly to help me sleep. I wake up several times a night and can't stop my brain from racing. I have even been known to get up and write notes on the stuff that was bothering me.

I'm afraid I have made a bad name for myself with the staff at the nursing home because I have had to complained about the care my husband has received. There are constant issues with his indwelling catheter. I had no problem with that when I was caring for him at home. Perhaps I am too critical but some of the things are so basic there should be no question about doing them right.
He is about to be moved out of the dementia unit and to a floor where everyone is in wheel chairs. I hope I can make a fresh start. I thought I was always helpful and supportive to the staff but I think they resent outsiders having an eye on what they are doing. My husband is in no position to speak for himself so I have to advocate for him. This is so very tough and if there were any way I would have him at home.

A very normal reaction my dear. We DO want to give a better quality of life, but remember you did not cause the illness, and all you can do now is to love your person.....It has to be one of the worst situations to have to face. Blessings.xxxxxxxxxxxxxxxxxxxxxx

I would also like to say, let the staff take care of him, they are well trained for the job, and trust me, nobody does nursing for the money! The motivation to nurse is always based on love and deep compassion. I am convinced that proffessional care is the best for patients with dementia - hard though it is for loved ones to "let go"....Nobody does well trying to cope with this situation 24/7. Remember, even the staff works in shifts. I do assure you, that nurses become VERY fond of their patients. Things like catheters are necessary.

Thanks, Barbara. It sounds as though you may be a nurse. I totally agree that nurses go into this profession because they want to help and I don't fault the ones who cared for my husband. Unfortunately they do not do the hands on work with the residents, rather that is done by personal support workers who are poorly trained, poorly paid and don't necessarily possess the compassion required to deal with this very challenging population.
My husband moved to another floor yesterday and so far the staff I have met have been friendly and helpful. It will certainly help me feel more relaxed and maybe allow me to take time for myself.

Don't stop standing up for your husband...it's your right and your responsibility. But maybe this is an opportunity for a fresh start and you might find a better way to get the results you want.

I would talk to the head nurse in this unit. Explain that your husband seems to be having problems with the catheter since he came to the home. Don't blame anyone. Fact is that no one is going to give him care as good as you. But if she is aware that this is an ongoing problem she can direct the right people to do what is necessary to try to prevent future problems.

Be nice. Bring cookies for the staff. Make them your friend. It is really true that you get more with honey. But at the same time you can make it clear that you are there and you are watching.

If issues continue you go to the head of the unit and then the head of the home. Give them a chance to fix their problem and if they can't you go up a level.

Thank you. I have done exactly as you said. I have made myself known to the staff in a friendly way. I let them know my husband presents a challenge with the added issue of the catheter and I'm ready to help in any way I can.
Fortunalely the charge nurse is very aware of the problems we have had and spent time prior to the move preparing staff in what is required.
I have already had to go to administration a number of times and I hope I won't have to do that here. It took its toll on me as it is not in my nature to complain.
The part-time PSW asked me a lot of questions prior to his first shower with her today and I appreciated that. I think we are off to a good start.
I realize I have strayed off topic here but did want everyone to know that I am feeling better and thank you for your support.
I'm starting to feel more relaxed which is good as I plan to have a couple of days at a cottage with a friend.

I agree with all the advice given to you. After my hubby passed, I was feeling guilty that I didn't do a better job, but then remembered that
when I was doing it, I believed that I was doing the very best I could.

It is impossible for one person to do the work of 3 8hr shifts in the NH. You can still be an advocate for him and be there for him some of the time, but you have to know in your heart that he is in better hands there. And is is absolutely necessary for you to take care of you.

HUGS...C