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My 83 year old husband has dementia and spinal osteoarthritis. He keeps falling and is getting out of bed and falling. His doctor said he thinks it’s time. Currently we live in a continuum assisted living community. My two grown daughters think it’s the wrong time during COVID and that he will just be lying in bed by himself. I feel so sad and guilty but I am also very tired. Thanks

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My husband was in a nursing home got the covid is ok now please check facility to see how many covid patients are in there first.
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You said the conditions he has - they are serious. It is time NOW and many of the homes are opening up their restrictions. I think if nothing is done now, YOU will be impacted and then what. Who will take are of you? His time to go is now.
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Riley2166 Jul 2020
But if they want to assume full time care for him, then let him but you remove yourself.
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Imho, you appear to have stated that you are in an "Assisted Living Community" currently. Perhaps you are implying that your husband needs greater care, such as Long Term? Prayers sent to you.
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You are in assisted living already, if I read right. So you should have some help now, but need more, if I understand right. You should be familiar with the COVID stay in room policies if you are already in assisted living.

First COVID isolation is real and required and needed to protect all residents. My mom and others went down faster due to isolation. Although thankfully she knew caregivers and 1 resident visited her. I had a part-time private caregiver, who the assisted living knew and cleared, for couple hours M-F. But I could only do window visits. So I hear what your children are saying, but I hear you are worn out so more help is needed at very least.

Here are some ideas and questions for you or your children to ask:

Does he need skilled nursing or memory care unit? Can he sit in wheelchair that reclines? If so would going to memory care unit or skilled nursing during day only help and at night where you are now. Several couples where my mom lived did / do this. I think still allowed curing COVID.

Can you get more help in room help in your assisted living room via hiring a private care giver? Costly, but would give you some relief and less change during COVID. Can you get ideas from fellow residents or their families for who or what agency and costs? Will assisted living director help you with ideas?

Some memory care units have 2 beds in a room. Would you be willing to move in together even if only 1 of you need it? [Normally you could visit, but with COVID even if in same building, this may not be allowed. However they should be able to ask assisted living company and local directors if they could make an exception since you would be in same building, but difference area.

Would Home Health or even Hospice help some with care ./ cost?
[He will be the first 14 days in quarantine in a new area/place, too]

I was lucky. Where my mom was, the director was very helpful to make combinations to avoid moving someone their apartment in Assisted Living to Memory Care until not safe otherwise. But some still had to be moved. Others had other care (private or in memory care daytime only).
Hope this helps.
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When you look at yourself as a caregiver...it is " time"/ Get some help for other house and meal stuff so you can just be there to assist when you see the need. When your Dr. thinks it is safe then he can be moved. Shop the facilities as to their record on "covid". He will be a total care and will have to have railings on bed to prevent his getting out. This has effect on his efforts he will no longer be allowed to do. He will need help medically to deal with the anxiety that results in "giving up doing what he thinks he can". I do not recomend you get a hospital bed with railings while he is at home. If you did total bed care (with anxiety meds) you would have to function like a caregiver in a facility. The nursing superviser can educate you to see what your job description will look like.
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My Papa went to Rehab on March 7th. On March 8th, they went into lockdown, he didn’t even have any clothes since he had come straight from the hospital! He then went from Rehab to Permanent Placement in the same facility.

He was mad in the beginning, but now he absolutely loves it! He doesn’t talk about coming home any longer. He loves the staff, he even loves the food. Who knew!

The reason Papa went to the facility? Lots of falls! And a bit of dementia, and Parkinson’s, which is a “Fall down disease”.

If the doctor says it’s time, it’s actually probably past time. It’s time for you to put yourself first and get some time to rest and recover. Let the professionals take over his care.
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If the daughters don’t want him to go, they need to get in the trenches with you and not just tell you what to do and observe. That is not fair to you at all. I totally understand their feelings but I also understand yours. Mom had spinal problems and dementia too and Dad did not want her going to a nursing facility and we (her daughters) met with caregivers and got it set up except for after 9:00 pm when they left. Mom could not walk. Dad was in his 80’s. She was yelling out at 2:00 AM that she had to “pee”. Dad tried helping her to potty chair and they would end up in the floor. Soooo, we went to diapers but Mom would still yell out. Dad could not sleep. My sister and I took turns going to her doctor appointments in disability van. This took a village!!! We finally got Mom into nursing facility after she had to have serious eye surgery and lost her sight in one eye totally. We were all worn out mentally and physically. You have to do what you have to do or you will become sick yourself. I did. Had a cardiac event and cardiologist said it was stress induced. Do what is the less stressful for YOU at this point. Don’t tarry. Wishing you well. Good luck.
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Could you provide a hospital bed in your house? Or a bed for him with side railing? Your insurance may cover it.
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elaineSC Jul 2020
We had a hospital bed for Mom and Medicare paid for it. You turn it back in to the medical supply store after you don’t need it anymore.
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KLBMaxx, I'm SO impressed by your strength. I'm so grateful you're hear!! I'm a 65 y/o daughter. After many falls, breaks, surgeries, the pros announced mom couldn't live alone. My mom didn't need to be in a facility, and desperately wanted to stay at home, so I moved in with her to bridge that gap. If I had had any emotional support at all from my 2 sisters, I maybe could have kept going (I'm naturally physically and emotionally strong), but I learned to my surprise that without ANY emotional or actual) support from my sisters, even occasionally, for 5 years, I realized I could not couldn't continue on in an emotional vacuum.

KLBmaxx, based on my own experience, I don't think your daughters' opinions and ideas can be considered in your current situation unless they're able to physically arrange to BE WITH you and HELP you at home, on an ongoing basis, physically and emotionally (or alternatively, pay for someone to help you). Humans need humans. I reached a natural point where I just knew it was time when I was exhausted and depressed most of the time (I was very isolated and didn't have my two sisters' support). God bless you, good luck, and keep coming back.
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I too would be reluctant to move someone into skilled living at this time. Have you investigated the cost of having help in some of the time? Also, some insurance companies are starting to offer payment for support in the home; yours in your state might. It won't hurt to check.
Doctors and others often have a skewed opinion of nursing homes. They have the idea that patients will receive the care they need, and this is simply not always the case. That's why when our loved ones were in for rehab post-surgery, we were there every day. I would not have trusted staff to properly care for either of my parents during their stays. There were simply too many mistakes made, and insufficient staff to do the work.
If after you've investigated all the options and your husband must be admitted, I understand and fully empathize. But it will be very, very hard for all of you either way. Sometimes we can do nothing more than to choose which pains we're willing or able to endure.
I wish you and your family the best during this strange and awful time.
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One person cannot provide 24 hour care. If daughters can stay daily each taking 8 hour shift with you - maybe you could manage short term. Or hire livein caregiver for minimum 16 hours per day. Hard to afford. Dementia depends on how far along - is there memory care unit where you are? Does he still know who you are or your children are? If the answers to above are mostly no's or I can't helps - then you already know what needs to be done. You don't want to fit the scenario "so often the caregiver dies before the one receiving care". Then what would happen to him?
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If your 2 grown children feel he needs to stay home then they need to help. Not just once in a while but on a regular basis, so that you can count on the help. They need to realize that you can only do so much with out destroying your own health. You need to be able to count on others to help and for you to take breaks and go out, even if it's just for a cup of coffee with a friend. I understand how difficult caring for someone with dementia is - I'm caring for my father. He's been with me for 5 years. Your husband also has the physical problem. I'm 20 years younger than my father and it's still very difficult. I would imagine that you would be around his age, physically and emotionally the situation is very taxing.
Let them know that their help is needed or you must look into a nursing home because the situation is more than you can do.

I wish you luck in your decisions
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I’m sorry. It is extremely drainingTo be the caregiver and I don’t think you realize how much until your LO does go to long term care. Remember, any decision you make is made with love. There is no wrong decision, it’s just a decision. It's a horrible disease. Best wishes.
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I know there are other issues, but my mom as arthritis and dementia and terrible balance so she uses a walker and sometimes wheelchair. To prevent her from trying to get up to go to the bathroom, we use a Ring motion detector which alerts me on my phone when she is sitting up and I can see what she’s doing. And we have a floor sensor pad which makes a loud alarm if she actually steps out of bed. It works to deter her and alerts me. It is working although sometimes tiresome if she’s moving around a lot at night.
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Often when they fall all the time assisted living will evaluate whether they can stay or need more care. It’s not a matter of if he will break a bone but when.
by Skilled Nursing, I assume you mean long term care or nursing home setting. Yes, even with dementia and fragility this can be where they are placed.
since you are in a continuum care residence, have you considered a memory care section and perhaps he needs to be in a wheelchair to prevent falls?
you might have a consultation with the director of memory care and see if that fits his situation better.
I would not let Covid define what happens. That will be here a long time. Yes you are tired and do not feel guilt for doing what just plain needs to be done. Your husband needs care and you can't provide it.
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Are your daughters taking care of dad?
If not then they should have little to say in this matter.
The ONE guide I used is SAFETY
If it was no longer safe for HIM for me to care for him at home I would have made the difficult decision to place my Husband.
If it was no longer safe for ME to care for him at home I would have had to place him.
I never wanted to injure him while I was taking care of him and I never wanted to get hurt myself.
I got lucky and when he fell he did not hurt himself and I was able to call 911 to ask for a "Lift Assist"
When it became more difficult for me to get him up and out of bed he was on Hospice and with the equipment that I was able to get from them I never had a problem transferring him.
So..if there is any possibility that you would get hurt caring for your husband, (who would care for both of you at that point?) or if there is a possibility that he would get hurt the decision is really pretty clear.
Your option would be to have caregivers some in and help you when you need help. Mornings getting him out of bed? do you need help changing him? do you need help showering him? Would you need a whole day of help or a few hours each day. (personally you need a break from care-giving so at least 2 days a week you should have someone there all day so you you get a break.
And by the way he might not need "Skilled Nursing" he might do well in Memory Care
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My Mom did well in a NH. My daughter is an RN with 20 yrs experience in rehab/NHs. She helped me become an advocate for Mom. What was important and what I should leave alone. Yes, this is a bad time to have to consider placing a LO in any facility.
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I had my Mom in skilled nursing for a while. As a nurse I don't highly recommend them and here is why. They are grossly understaffed, staff turnover high and they are not paid well. So things are sloppy and lazy. Right now during the COVID pandemic the risk is very high that he could get COVID. I would recommend if your daughters could help out or you get someone form an agency to come in. Medicare does not pay for Skilled Nursing and it runs around $500/day. Sorry to be so negative but I am being honest. I spent a great deal of time with my Mom in skilled nursing and saw everything first hand. My Mom succumbed to COVID 19 in the Skilled Nursing area of her retirement home.
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Snooky76 Jul 2020
Scubakitty, My hwp went for rehab after a week long hospital stay. It was at a skilled nursing facility. When his rehab goals were met, I planned to bring him home, but when Covid-19 was brought in by the staff, he was put in quarantine for eight days because of a slight sore throat. All PT, OT, etc. was given in the resident rooms with limited space to move about and his PT goals were never met. Then many Covid-19 cases were discovered and everyone in the facility, patients and staff were tested. He tested positive and lost 20+ lbs. He is still in quarantine on day 43. Not allowed out of bed, still getting some PT, OT. I want to bring him home with home health care but the facility is refusing, saying it is not a safe discharge plan. I just want to give him a chance to have proper nutrition (not now enough calories to regain anything), and proper medicines (new ones substituted and they have serious or moderate interactions with each other and with another medication he needs daily). Because they can cause bleeding and bruising, their answer is to keep him in bed. On home health care, after 30 days, I plan to put him in a different facility locally where he will be cared for by a loving family for the few months he has left. Now having to involve lawyers and ombudsman to get him discharged!
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SNF is more for those who require skilled nursing care. Dementia and falling (even the arthritis) are usually not considered skilled care.

Are there any alternatives, such as hiring someone to care for him for at least a few hours for you? You DO need help and support as this is draining even for younger people! I don't know the going rate for an aide in your area, but just assuming $30/hr, 6 hr/day would be almost 5500/m, however NHs are much more expensive. 4 hr/day would be under 4k. Does the community you are in offer any "extra" care? What, if any, charges do they have? Would he qualify for any VA assistance to help defray the costs? Medicaid?

NH might not be the best place for him, regardless of the virus. It will not stop him from falling and/or trying to get out of bed. Even in a NH, the care is NOT 24/7, i.e. he will be cared for, but not monitored 24/7. Does your continuum assisted living include a MC unit? Granted, he will fall there as well - no matter where you place him the falls will continue, but IF there is a MC unit, he might get a little more "oversight" and perhaps you could be allowed visits?

If NH is the only option, it is a decision that you have to make while weighing doctor advice and alternatives. Daughters can make suggestions, but it isn't really their decision to make.
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JoAnn29 Jul 2020
My Mom was healthy in every other way and the diagnosis od Dementia go her into a NH. If a person needs 24/7 care, they can get into a NH.
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You are the wife...you make the answers. Let the daughters come in for just a week, 24/7, and let them get the "feel" of what it's like to be a caregiver. I'm going to have to make the same decision one of these days for my husband, and his grown sons will not influence me. They're both out of state and only see him once a year, and they know what I'm going through. Whether or not they approve of any or all of my decisions aren't going to matter. They know that I'm doing my best for caring for their dad. So, please don't feel guilty in making the right decision for him and yourself. Best to you.....I understand. Prayers.
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lynina2 Jul 2020
Depending on the facility, daughters may not be able to visit the parents. Some assisted living facilities are in lockdown. This is quite a difficult situation for anyone who is a caregiver. There is no adult daycare, and I'm not sure if skilled nursing facilities have much of an activities program due to Covid.
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It is time, you are worn out, time to take care of you. Covid could go on for quite awhile. Daughters do not get a vote. Talk to the facility about getting the move arranged, after all, restrictions are beginning to ease on skilled nursing facilities.
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I’m not sure your daughters have any idea of how difficult this is for you. Taking care of a loved one, particularly one with your husbands issues is physically, mentally and emotionally exhausting. I’d talk to them and tell them how you feel and how your own health is suffering. Would they consider helping you.
Even if there wasn’t covid, there is never a good time to go into a nursing home. It becomes an issue of necessity. Sooner or later, the decision ultimately comes down to what is the best thing for you and your husband. If you’re doctor thinks it’s time, they’re probably right
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Your daughters don’t get a vote. Your DH’s doctor has said it is time, you know you can no longer manage.
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Your daughters should do some research on what their dad’s care will be like in skilled nursing and not just assume he’ll be lying in bed. If his doctor thinks it’s time and you’re exhausted by his care, those are good signs it’s time. It doesn’t mean you don’t care, it shows you care enough to provide him with care that will be safe for his needs
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