All mixed up

Nowhere

Nine years ago I retired early to care for my mom, dad, and husband (all in dementia) in two homes two miles apart. Tonight we have four homes amongst us. My mom went to heaven last Christmas. My husband is in memory care sharing a room with who he believes is his wife. My ninety eight year old dad’s house is empty presently, accept for his live-in care giver waiting for him to come home after he fell and broke his femur. This past week I have been sleeping in his hospital room as he underwent surgery and now tonight I’m in the spare bed in his rehab room. My house sits empty. We’ve collectively been thru three broken hips, a broken shoulder, a heart attack, blood clots, bipolar disorder, skin cancer, delusions, paranoia, rage, and depression. I feel as though I have dementia PTSD. I feel I’ve lost myself and I’m losing my mind, too.

Ed1937

Wow! You have every right to feel that way. I'm so sorry. Hopefully things change for you, and you can get a long break. I hope both you and your dad can find some peace.

jmlarue

Sounds like everyone is being taken care of - except you. Why were you sleeping at the hospital and, now, the rehab?

Mint

I’m so sorry.  I surely have nothing to complain about.

M1

Anyone would feel overwhelmed N. Is the rehab understaffed? Most families don't stay with their loved ones?

toolbeltexpert

Nowhere I can't imagine what you have been thru.  I'll bet your presence with your husband in these strange places maybe his only place of hope. I am praying for you.

Berryette

Nowhere-  I am so sorry for all your family has been and is going thru.  This morning during prayer time- I prayed that those on my list would find hope and encouragement everywhere they turned today.  I am adding you to my prayer list.  Since we cant "magically" make all this disappear- I pray you get some relief today and that it gives you the strength to carry on.  Take good care of yourself!

Hoot619

You have been thru a lot, it sure helps to get our feelings out. We can't keep it bottled up inside This forum is great for letting us blow off steam.  All I can do for you is keep you and yours in my prayers.

Annen1014

After reading several posts this morning, I feel really lucky and blessed. My DH wasn't diagnosed until he was 84, although the signs were already there much earlier. I see a slow progression. He has maintained his sense of humor, so far, but sometimes the jokes are probably used to cover confusion. He has a good social network and still participates in a weekly breakfast discussion group. Since he ni longer drives, other members of the group take turns picking him up and bringing him home. 

Our daughters are supportive, but not close enough to be of regular help We have a great medical team. His neurophysiologist expects that he will decline slowly. And I pray that is the case. I am ten years younger, and just looking at life expectancy tables I have always expected to be a widow for several years. 

I hurt for all of the people here who have so much heavier burdens than mine. 

Nowhere

Thank you all. Rehab is staffed well it seems. The problem is me and my sense of responsibility. I need to know what’s happening and he cannot tell me. I want him to get back home and enjoy the end of his life in his garden. I can’t imagine not having a short term memory and going to a hospital/rehab alone. My dad says he’s anxious when I’m not here. No disrespect to him, but he’s like leaving a very young child alone. He can’t recall he’s had surgery even. He got around hobbling and wouldn’t use a walker, said he’d know when he needed one. Well, he obviously needed one but …  If he can’t return to independently transferring, toileting, showering, he will need a memory care/nursing  home. 

Perhaps I’m suffering from guilt that I am healthy. I feel I need to be with my dad as he’s so vulnerable. My husband and his roommate do not ask for help from staff. I shower my husband as an aid and change their dirty sheets, sweep their room when needed, and provide pedicures. His female companion/roommate has been diagnosed with cancer on top of AD and hospice is visiting occasionally. Thank goodness as she has not family in state.  They keep their room heat on even when it’s 100 degrees outside. I’ve found her poopy briefs on the floor multiple times. Or his occasional accident hanging neatly in the closet on a hanger. He can still walk, dress, shower independently, and converse. But speaks of no memory save that from when he was a child. He can’t remember he had a roommate until he sees her. His facility has been closed since spring to new residents due to multiple state violations and trying to get their act together with short staff and change of administrators. For those with loved ones in facilities, the staff only has to ask if they’d like assistance, and if they are able to decline help. So be it.

This is a written pity party, I think. It helps to share with folks going through similar losses. I could walk away. Only thing stopping me is me. Must be love. Take good care all. May your journey on this heinous road be tolerable. 

jmlarue

I'm sorry you're in this difficult position. I can understand your feelings of obligation and not wanting your father to be alone, but is it really necessary that you be there 24/7? He still has a live-in caregiver at his home enjoying a respite from taking care of your Dad. Why does it not make sense that the caregiver provide some respite for you by attending to Dad's needs in the rehab facility? Just a suggestion.

Nowhere

Thank you, JM. He had to travel for surgery from his small coast town to the capital city and she does not drive in the city. 

To make matters more interesting I’m at the train station presently as I have car problems and will need to drive my dad’s car which is presently stored in my garage the next state over… albeit it is just a two hour train ride. 

There is a saving grace! 

ImMaggieMae

Nowhere, I understand completely why you want to stay with your FIL with dementia. I stay with my husband 24/7 when he is hospitalized too. Hospitals often aren’t great places to stay even for a person without dementia. It can be very frightening for a person who can’t remember. The hospital was happy to accommodate me.