I can only see him through his window if he is in the bed. He has fallen either trying to get out of bed or getting out of his chair. He has broken his little finger on one hand. He’s not wanting to eat and I feel this is because I can’t be with him. He holds his head down and looks very weak.
How does one cope with this emotionally? I’m scared he is slipping away and soon he won’t even know my face or voice.
I am scared, anxious, mad, crying a lot and I keep thinking there is more I could have done. We have been married 18 years and never apart till now. I don’t know what to expect over the next day, weeks, months, etc.
I don't think you should tell yourself there's more you could have or should have done in this situation. Dementia is a horrible illness that nobody asks for, God knows, or survives. It reaches a point where at-home care becomes impossible, so what more COULD you be doing, or have done, in this situation?
The grief process includes all the emotions you're feeling right now, anger, fear, anxiety, depression, etc. I suggest joining a support group and also getting any of the wonderful books on grief by Elisabeth Kubler-Ross:
https://www.amazon.com/s?k=elisabeth+kubler+ross&i=stripbooks&crid=24DR7B38SAY1G&sprefix=elisabeth+ku%2Caps%2C176&ref=nb_sb_ss_i_1_12
Sending you a big hug and a prayer for strength as you try to accept this situation and find peace with it.
I have been going through something very similar.
My husband was in a nursing facility after a hospital stay and became depressed. He thought I did not come to see him because I no longer wanted him because he was sick. ( talk about making your heart break when you hear that).
I finally managed to get him home but not until it was really too late. Now his dimentia has progressed to where I do not think I can continue to keep him at home with me and am looking into places that provide inpatient hospice and liberal visitation to those in hospice care and their families.
Most of the places where we live do not allow any visitation but I finally found one and it is such a nice place . Homey small comfortable quarters good meals and a small resident population taken care of by a family who owns and runs the operation.
I just keep hoping that the financials will work out so he can live there. He may not be happy about it initially but if he is comfortable that should pass....and if it does not ( my guy can be a bit mean verbally when he is scared or has his feelings hurt) I know I did not just dump him somewhere that I chose as carefully as I could so that he would be taken care of in a kind and caring manner. As close to what I would do if I was capable.
Can you window "visit"- will they get him up and let him know you are there to see him but not allowed in? It sounds like you see him sitting there dejected but he is not aware you are there for him, the staff should be helping him see someone is there to visit.
I know how hard it is to convey to someone who is often confused or disoriented through a window. It will be hard enough if I put him in inpatient hospice to get him to focus during the visit so he gets that it is me who is there to see him. I did not attempt window visits as I think it would have confused my husband more in his state.
My heart goes out to you I know being pulled apart from each other by something like this is agonizing. Especially when you have to decide you cannot take care of them anymore by yourself. We had never been apart except when I had my hip operations. I got so I would drag my heels going home from work. It was the worst part of the day for me - coming home and not having him there to greet me.
Have you spoken with the social worker at the facility and asked for referrals to help you? If he is on hospice then the team may also have a chaplain or counselor whose resources are also available to you, as his spouse. Lealonnie1 also has some great suggestions.
Much 💖 - hang in there.
It may not have been as fast (the 2 weeks) but it would have happened. there is always an adjustment to any move so a decline is "normal"
And a fall may have happened at home as well. And thank goodness it was "just" a broken finger and nothing worse.
Can you let the facility know when you are going to visit so they can get him closer to the window? And many places are allowing visits following strict protocol have they given any indication when you could visit following guidelines? And if he is there just 2 weeks he may still be in quarantine if so he is more isolated than he would be when he is out of quarantine.
Is he on Hospice? If not you might want to see if he is eligible. It would give another set of eyes on him and as a Hospice patient they may permit visitors. And as a Hospice patient there is also the possibility of transporting him to the Hospice Unit where they would allow visitors. He could be there for a few days for "symptom management".
Trust me I had my Husband at home and I was still scared, anxious, mad, crying and I was at times wondering if there was more that I could have done. These doubts will not change no matter where he is.
I always said that I was being ruled by 2 major organs in my body. My Head and my Heart. My only hope was that my Head would make the right decisions and over rule my Heart when it came to the really important decisions that I had to make.
Never doubt a decision that you made. If you have thought about something, made an informed decision based on the information that you had at the time then the decision is the right one.
I'm not going to lie, there will be great days and there will be ones that you just want to curl up in bed, pull the covers over your head and stay. Those are the days that you have to force yourself to get up. And when you do put a smile on your face, as they say.."Fake until you make it" you will start to feel better.
What to expect and do over the next day, week, month, year....? You be who you are. A loving spouse that is still a caregiver, an advocate. But you also have to be you. Find meaning, purpose, do something for you. Volunteer, clean out the closets that have clothes you have not worn in years, paint the bathroom.
Ask the facility if they have a Support Group. Talking to people that are in the same position will help. They can give you advice and as you become a "seasoned pro" you can give others advice.
Take care of YOU