Guilt

a04723

My DH is in the Severe part of this awful disease and in MC. He has been refusing his meds at times and is experiencing agitation, anxiety and aggression. I have not been visiting because I know that I am a trigger for his anxiety and want him to remain as calm as he can for his own peace of mind and for the staff that care for him. I feel horribly guilty for not going to visit because I know that he is waiting for me - but when I do go visit he gets all worked up and begs me to take him home and get him out of there. How do you deal with the guilt?

Pett

I know exactly how you feel (guilt) I left my wife in a proper nursing home and one day is all I could take and went back the following day to take her home. Lost sleep all that night too. Guilt feeling is very disruptive to your health so you need to resolve this if possible.

Dio

Same here. I know the feeling and how difficult it is to keep guilt at bay. Just know that you are doing the right thing for not going if you're an agitation. It's damned if you do, damned if you don't situation. He is being well cared for at the facility. That's what matters. But your health is important, too, if not more….hugs.

a04723

https://alzconnected.org/discussion/comment/237799#Comment_237799

It took everything I had not to bring him back home - even after 2 months I still wanted to. But then I remembered why I did it - he was needing much more care than I was able to provide and it was becoming a 24x7 job - I was not getting much sleep and was always afraid he would wander off in the middle of the night while I did get a few hours of sleep. I knew I needed to keep him safe and give myself a break. But the guilt is something that eats at me everyday. I am not sure how much he is even aware of anymore other than he knows he is not home. The care staff at the MC takes wonderful care of him and I know he is safe and even though he is still alive I grieve for the husband I once had. I just am not sure how to deal with the guilt.

terei

If he does better without you visiting, so be it. If you really must see him, try to find a way to go and observe him without him being aware that you are there. It may reassure you that is he doing fine. I would try some counseling to be able to voice your feelings.

CampCarol

I can’t take credit for this statement, but try to remember that you’re not doing this TO him, you’re doing this FOR him. My DH is in the hospital right now and headed to rehab tomorrow or Saturday. He is crying and begging me to go home. It’s heartbreaking, but I cannot care for him right now. I keep trying to repeat this mantra, but it is so very hard. It’s very easy to say ‘do not feel guilty’, but we all have our own complex situations we’re dealing with. You may want to ask for a medication review to see if something can be tweaked. Hang in there, you’re doing the right thing!

SDianeL

ask the caregivers at the facility if he acts that way when you’re not there. Many dementia patients want to go home but it’s not a place they want, it’s a feeling. They want the comfort of home because of their anxiety. We understand the guilt. Just keep reminding yourself why you made the decision. You are making sure he’s well cared for. They can give him his meds in food. Talk to the nurse. Is he on anti anxiety meds? When my DH said he wanted to go home I would say when the doctor says you can and then I would give him a treat. He liked ice cream so that worked. The facility had it handy. When I would leave I would just slip out and not say goodbye which triggered his anxiety. Sending hugs. 💜

a04723

https://alzconnected.org/discussion/comment/237845#Comment_237845

thank you

a04723

Thank you. We are looking at adding some new meds and weaning off the Seroquel to see if it helps.

a04723

DH is currently on Depakote and Seroquel. The doctor will now be putting him on the Rivastigmine patch and slowing weaning him off Seroquel and putting him on Risperidone. And he does act that way when I am not there at times, but my visits only increase the anxiety he is feeling. For right now, we have decided it is probably best that I not visit until they can get him back on a routine med schedule and calmed down for more than a day or 2. I do know that I did what was best for him, it is just hard. I hate feeling guilty but am trying to remember that I still have a life too. Feels very selfish though. Thank you for responding and hugs to you too 🖤

Dio

https://alzconnected.org/discussion/comment/238288#Comment_238288

I think it's wise to not visit for awhile. Was Depakote recently added? It did wonders for my DH but it took about 6 weeks to show effectiveness. It's now been almost a year and a half. He's shown so much improvement that now people think he doesn't have dementia. Good grief. It's prescribed off label to curb aggressive difficult behaviors. I hope it helps yours, too.