How can I reassure my loved one she is not in any danger?

Supercharts, I understand that you want her to be home with you, and that she want's that too. But you and I both know that sometimes what we need is different from what we want. You say she is wheelchair dependent and hasn't made any progress in rehab, so how are you going to care for her at home? How will you bathe her, toilet her, transfer her from bed to chair and back again multiple times a day? Even paid help can't be there all the time, unless perhaps you are a millionaire? And if you hurt yourself trying to care for her and need care yourself, who will be there for her?
I respectfully suggest that you try to come to terms with your new reality, make her new home as comfortable as possible, visit her often, and leave the heavy lifting (literally and figuratively) to the pros. ((hugs))

supercharts, I'm wondering how you know about the verbal assault? Virginia, with dementia, cannot be relied upon to provide accurate reports. Did some one else report this to you? Did you witness it?

Old skin bruises easily.

You are very, very wise to keep a close watch. But when dementia is involved you need to be careful not to take everything at face value.

There are only two weeks or so under the ombudsman hearing. Can you spend a lot of time with Virginia before that?

I take it she is in for rehab or tcu -- is that the case? When my son, mid-forties, mentally perfectly well, was to be released from rehab after a motorcycle accident there had to be a care plan in place. The occupational therapist came out and looked at his house and they made plans for the narrow doorways, etc. Often patients are released to do the last leg of the recovery at home, and it is standard protocol that there be a viable plan in place. Yours sounds good. Cooperate with them if they have additional suggestions. You are all on the same side -- Virginia's side.

With dementia, the fact is that Virginia will get worse, and the time may come when she cannot be cared for in a private home. I hope you have a good long time with her at home before that happens. Use that interval to research care centers that would be suitable for her when/if that time comes. There are many, many care centers in Hennepin county. She would not have to be in the one she is in now.

Personally, I strongly advice against removing her AMA. This is a long journey. You and she will needs lots of help along the way. You truly do want everyone to be on the same side, with no resentments or assumptions to get on the way. Hang in there at least until the meeting ... and put on your most cooperative face for that meeting, while still acting in Virginia's best interest.

Supercharges you can do a great deal to help Virginia's physical therapy yourself.
You can move her arms and legs and rub her legs to stimulate the circulation. There are special alternating pressure boots that can be put on her legs that stimulate the circulation. She may find them uncomfortable .
When she is in the wheelchair or geri recliner make sure her legs are elevated with nice soft pillows under them.
As a patient journey with vascular dementia nears it's end they frequently stop walking and this may indicate that death will be within a few months.
As far as taking Virginia home either with medical approval or not think very carefully and do not rely on friends however well meaning they may be. When they see the enormity of the task they will not be able to cope assuming they are in your own age group. Encourage them to visit frequently maybe read to her, help her eat but do not expect the heavy nursing care that will be needed. You are going to need care 24/7 so that means a minimum of 3 full time caregivers and a 4th to cover days off. Can you afford that?
However much you love your wife you will not be doing her any favors by taking on more than you are capable of.

Does she know what she is scared of? Do you ask her? Is it her safety or something else? Ask her. You may be surprised what you find out. Then reassure her about whatever it is. Nothing may make sense to you. That is when you need to become creative with the therapeutic lies to continue to reassure her. My mom was always afraid something had happened to her little girls. I woukd tell her they were spending the night with friends. And I used names of actual friends that naturally mom liked.

Ah, Robert, my heart goes out to you and Virginia. This required separation of soul mates is hard in any case, but if one member of the partnership can't even understand the situation it is heartbreaking!

"Sweetheart, I'm so glad we found a safe place for you while you are healing. I checked it out again today and it has an excellent record for keeping its patients safe and helping them to get healthy. I miss you but I am glad you are being taken care of so well. I'll see you tomorrow."

If you know about specific things she fears, reassure her about those things.

This is hard. There are no magic answers. Continue to love her and reassure her. Don't argue with her. For example, if she says she is afraid of the lizards in the closet, don't try to convince her there are no lizards. Tell her that the staff checks three times a day and removes lizards if they find any. They very seldom find lizards, and the kind they do find are harmless.

If she is afraid she is losing her mind and that her memory is fading, tell her you will be there to help her. You will be her memory when she needs that. You will keep her safe.

Don't try to convince her that the danger she fears isn't real -- reassure her about a solution.

It is VERY hard on someone with dementia to be in a hospital setting. I am so glad you can be with her everyday. But you need some breaks, too. Are there other loved ones, friends, relatives, who can spend part of a day with her and give you a little time to yourself?

Hospitals are strange and frightening places for many people so it is natural to be scared. Being demented only adds another layer to the fear because you loved one is incapable of understanding why they are there and what is going on around them.
Ask the staff how she behaves when you are not there. If she is calm and peaceful after you go home then it maybe better to spend less time at the hospital. I know this will be hard on you because you naturally want to keep her safe. Otherwise continue to spend the time at her side. You can do things like reading to her or playing music. Hand feed her if she is too tired to eat but do not force feed her. Having her loved one in the room is the greatest comfort you can bring.

I would seriously consider the consequences of going against medical advice regarding the care of a senior with dementia. No matter how bad you want Virginia to improve with physical therapy, that may not be possible. Sometimes the patient's limbs do not cooperate and other times they are not mentally able to focus. I think that at times, we see activities, treatment, etc., through our eyes, but not through the eyes of the patient.

Dementia can cause depression, anxiety, sleep disturbances and delusions. The mental anguish can be frightening. I would be careful, refusing treatment that could relieve her pain. Most medications carry some risks, but I would weight those carefully, with medical consultation. I would also listen to experts, before I got in over my head. Relying on volunteers to help you as your provide 23/7 hours of care for a wheelchair bound person with dementia, sounds extremely ambitious. Often with dementia patients you have to be up through most of the night. This can happen regularly. There are so many things to consider.

Does she have any family members who are involved with making the decisions?


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Let me understand. Virginia was int he hospital when you first posted, at the end of April. She went into a nursing home for long-term care at the beginning of June. Where was she in May? Was she in a rehab or tcu facility? If so, did they determine that she was not and probably could not make progress with rehab and that is why she went to a nursing home? Did you agree to that, at that time?

Why is it you don't seem to be given much say over her decisions? Is there some kind of court order involved? Do other people have a say in her care? For example who is her medical proxy/medical power of attorney?

This is a puzzling situation. I would like to hear a more complete story, so that perhaps our advice could be more specific and on point.

When my dad got scared I used to tell him that I had taken care of everything, that I was always aware of what was going on and that I wasn't going to let anything happen to him. This worked for him.

supercharts, please be careful that if you remove Virginia from her nursing home "against medical advice", that could possibly impact Virginia's health insurance, thus the insurance might not pay for any more care.

Do you know how much work is involved caregiving someone in Virginia's condition? I suggest you spend 24 hours staying over night if allowed, to see what all is involved for 3 or 4 days. She might need 3 full-time shifts of care.