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Virginia is 85 years old never been separated from me i am 79 years old. She is in the hospital and i been there every day for 2 weeks she has dementia i am learning about it. She calls me twice a night and says she is scared i tell her she is safe. What more can i say to her for her comfort?

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Hello, and how is it going?
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That's my plan as well safely take care of Virginia. She will get better care better food and a lot of love that's the key point of it all! Thank you!
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Supercharts, I have said..As long as I can safely care for my husband he will remain at home. I think he gets better care at home and has a lower risk of getting ill than if he were in any facility.
As to the "terminal" illness...Life is terminal. Dementia is terminal..As long as there is a continued decline that can be documented she can stay on Hospice.
Good luck!!
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Hello Grandma1954
That's an idea i have not thought of i will look into it. I was under the impression one had to have a terminal illness to qualify for Hospice and live in their facility and was not aware that home Hospice was an option. TY
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Supercharts...is the reason that the hospital does not want you to bring her home that they do not think you can care for her? Or for her safety?
If you think it is appropriate contact Hospice. They can assess Virginia and if they determine her to be eligible for Hospice they can get all the equipment and supplies you need to care for her in your home. Lifts, gloves, pads, briefs, ointments, medications....and they will have a CNA come in a few times a week to help bathe her, a nurse will come in to monitor her. You will have a Social Worker and a Chaplain that will help YOU.
From your posts I think it sounds like you would both be more comfortable with her at home. If and when pain management becomes an issue most if not all Hospice have In Patient Units where a person can go for pain management or if you need a break Virginia can go for Respite.
Just for information give a few Hospice groups in your area a call and ask a few questions. Or ask the Social Worker at the hospital if they can suggest who to call.
It is a phone call, you are not signing up for anything, and if you decide after a while that Hospice is not right for you you can stop Hospice services at any time.
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Virginia is looking better after the Buspar 7.5 mg three times a day i have a meeting with the Hospital social worker and the head nurse with my Ombudsman and Virginia's social worker July 19th to look at Virginia's progress and see if i can take her home.I have a Lumex stand assistance machine to help Virginia at home.(The Lumex Stand Assist is a transport assistance unit that keeps the resident actively engaged in the transport process. Transport functions of all kinds are quick, convenient, and require minimal caregiver assistance. Users grasp the middle bar and use their own strength to pull themselves up into position. A padded split seat swings out to allow loading or unloading, then swings back to form a comfortable and stable transport seat. The Stand Assist is a convenient toileting alternative to a wheelchair.
400 lb safe working load
Padded dual knee pads and seat pads for comfortable transport
Stable base with locking rear casters
Fits easily through narrow doorways
Affordable alternative to electric sit-to-stand lifts)http://www.quikshipmedical.com/lumex-stand-assist-lf1600 I am doing well i am paceing myself by visting Virginia every day for 3 hours i am willing to give Vrginia all i have for her to be home i am possitive she will walk again and we can build more memories together. TY Zdarov for asking.
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Hello, how are you making out?
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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.
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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.
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Supercharts, I am sorry Virginia is receiving this treatment. I think I mentioned this before, but if you can find a facility with more professional staff, it might be fairly straight-forward to transfer her to a different facility. The facility she is at now sounds bad. Even though they are discontinuing rehab for her, her stay may still being being paid for by Medicare. If that's the case, getting her into another place might give her time to build strength before coming home. It is just harder to find a spot in a facility if you get her home and then decide it is too much.

However if you going to bring her home for sure, I wish you the best! I hope you will find a nice caregiving team to help you, too. Your love and devotion for Virginia is really touching. Everyone should have such a loyal friend!
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supercharts, how about this input?! Awesome. It sounds like lack of physical therapy/they aren't addressing the vein issues is one of the main reasons you want to bring her home? I'd be worried too - as someone said, maybe it's about moving her to another facility. Where may I ask has been her dang doctor since May 1? Could be another change to make, stat. I don't have the experience that others here do, but it heartens me to 'know' the people on this forum, and to learn from you all. Thank you.
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supercharts, by chance does your wife forget that she can no longer walk? Why I ask this is because of what I went through with my Mom, who had a major fall at home, went into the hospital, then into rehab, then into long-term-care. Rehab tried all they could to get my Mom to even stand up, and Mom couldn't.... her brain was confused due to the fall.

My Mom was very active at night, trying to climb out of bed or her geri-recliner. Mom would forget she couldn't stand up. She was constantly falling, so make sure your wife has fall mats next to the bed, and that the bed can be lowered to the lowest position. Eventually my Mom was given medicine to calm her down so she was less of a risk of falling.... she had her fair share of scraps and bruises as her skin was so thin due to her age.

supercharts, as I have mentioned before, if you remove your wife from the rehab center before she is signed off on a discharge, Medicare might stop paying for any future care that is related to this medical condition. That is one thing you do NOT what to happen. I know you want your wife home, but please rethink this early departure.

I hope everything works out for the best. Keep us up-to-date.
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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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@jeannegibbs Virginia is now 20 days into long term nursing. The reason for Virginia to be in the nursing home is because of being wheel chair bound but no therapy is being planned in the near future leaving her in the wheel chair with deep vein venous insufficiencies.Virginia is taking no drugs but they have been offered but they are antipsychotic drugs.(Residents of long-term care facilities are increasingly being placed on antipsychotic medications despite having no proper diagnosis to warrant their use. Antipsychotics are especially dangerous when prescribed to elderly individuals and have been linked to numerous resident deaths in nursing homes and other long-term care facilities.)This is why i am considering AMA. Stuck in a wheel chair with no thearpy and drugs being the nursing homes answer for Dementia is unnerving.
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@stacyb Thank You
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Great points by Jeannegibbs. Much can be learned from others who have gone through similar situations.
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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.
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Hi Robert, I posted a message to your inbox, please know that I am thinking of you!
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Thanks Zdarov !
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Hi, supercharts! Maybe you could write and post a new question, not sure how many will see this followup.
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Since my last post Virginia has received 4 bruises and 1 verbal assault all have been reported to the Health Dept. and the head nurse and Social workers.Granted Virginia is handled often as she is confined to a wheel chair but this should not happen so often as she has been here in this nursing home for only 19 days i have a meeting with the discharge personal June 28th and a ombudsman with me and her social worker. With no Therapy treatment now as she failed the first time i am concerned that her Deep Vein Venous inefficiencies could lead to a blood clot. I have not see the Doctor since Virginia was placed in the nursing home May 1, The Health Dept. has asked the general nurse to have the Doctor see Virginia the Doctor responded by saying he will see me the first week in July. Virginia is on no drugs but most are on drugs on her floor making it very hard on her. Now what should i do is my question hold tight or take her out AMA? We are trying to get to June 28 to see about my discharge plan. Any advise will be helpful to me.My discharge plan is as follows:Our plan for discharge: Transportation - Metro Mobility- Travel on Transportation Social worker from hennepin county
Wheel Chair-Walker-Portable Toilet
Shower Chair-Raised Toilet Seat
Bathroom Handles-Shower Handles
Urine Bottle-Bed Pan-
Apartment at Trinity Apts. with security with elevators-Net work of friends in Trinity Apts.
I have purchased a Stand up patient lift for myself and or the Health Care Nurse & Therapy person to transport Virginia from her bed to the Wheel chair and viseversa & from the bed and wheel chair to the toilet. Virginia is not delusional at home with me and i am home 23/7 with help from Virginia's network of friends i can be home 24/7 if necessary. I have accounts at Amazon-Walgreen-Walmart-And several groceries stores that deliver.
Virginia's environment will be better than any nursing home and social life will be good for her.Virginia wants to be home and i want Virginia to be home. Home is Trinity Apartments in the Longfellow neighborhood when we been a part of the community for since 1981.
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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.
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Thanks cwillie for your post and most likely this would be true in most circumstances. Except Virginia is not wheel chair bound because of the start of dementia we had an appointment for that May 9th (but Virgina had urine retention so i called 911) but rather for a black box drug called Halol & Zofran intravenous for 3 days that left Virginia unconscious which was stopped after i found out about it. I will be posting a new question later today.
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Thank you Zdarov for your suggestion of a new post i will do that.It is very stressful i am glad to have this forum to get opinions like yours.
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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))
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Oh my, I can tell this is so stressful, try not to worry too much because at least for now you know she's got good care. I think some people would respond here, but I would post a new question instead! So the subject line will be seen by people with that particular experience.
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Yes i could do that i thought about that but was not sure that maybe it would bring back good memories but at the same time sad ones as they remind her of home so much as to make her sad. Virginia has been in a nursing home since May 1 still cannot walk is wheel chair dependant with no help in sight as the therapy has ended the nursing home said Virginia is not making enough progress. Its looking like i will not get Virginia back home either as the Nursing home (In Minneapolis mn) will not let me take her out even by signing her out AMA they stopped me from leaving. I HAVE TO GET A LAWYER now to talk Virginia out of this nursing home as she wants to go home and i have POA i want her to go home also yet they have followed me around once when i was with Virginia just going for a walk and will not let us go unless we call the Police. Any advice of how i can take Virginia out of the Nursing Home please help.* Virginia's care was being paid for by Medicare now has switched over to Minnesota Medicare. Now on long term nursing i may never get Virginia back home any advise is welcome.
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Hi - I also wonder if you could bring in more things of hers from home that she can see around her from her bed... a throw blanket and pillows from the couch, a couple sweaters to stack on a table, some larger toiletries and her hairbrush, maybe a small painting or two (if you're allowed)? The generic nature of those rooms can be creepy. Best wishes to you and her.
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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.
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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?
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