We found a seemingly amazing memory care facility that offers respite ranging from one to six months at a time. This seems like a perfect (if that's possible) scenario for us to try this facility out. A month or more would give my husband and me a TRULY meaningful break and at the same time, it would be the perfect way to see how mom adjusts without having to commit full time from day one.

We decided a memory care facility would be a better option at this point than in home care. The biggest problem we face is not being able to sleep through the night and then being exhausted all day while trying to provide 24/7 care. We would literally need a caregiver here almost every night and then a couple of daytime shifts a week. I think this would be a more stressful scenario not to mention increasing our Covid exposure even more as most caregivers tend to multiple families.

So as we've been compiling a list of questions/concerns we have for the memory care facility, my husband says he has just one question for me. If mom ended up getting Covid, will I live with endless guilt for years to come for placing her there? If the answer is yes, he said we are NOT doing it because he will not watch me beat myself up. I get it, I do have the tendency to play the "could I/should I have done more/not done this or that" line over and over again after I experience loss of life - human and pet.

I've said this before...having to deal with dementia is difficult enough but doing it in the midst of a pandemic is a near impossible situation!!!

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cgblues - A few thoughts I had regarding your question:

Lots of facilities look good and the admissions person (sales person) is very friendly. Sadly, things can change after the check is written and your loved one arrives.

Giving up caring for your Mom at your home is replaced with the worry of how she is truly being cared for at a facility.

Make sure you know exactly how the facility is handling the pandemic as far as what would happen if staff, residents or your Mom became positive.

If you decide to admit your mom, make sure to get a first floor room with an outside facing window. (At the beginning of the pandemic, my Mom was in a courtyard facing room so we were unable to do window visits. Then after another fall, she was at a skilled nursing facility for short term rehab on the third floor. A staff member tested positive so bringing residents down to the first floor window for visits stopped.)

In New York State, each time a staff member or resident tests positive, visits are stopped for 28 days. If people keep testing positive, the date to resume visits gets pushed out further and further.

Infection control is difficult:

Your Mom could get Covid in the facility or at your home. No one - even yourself and your husband - can do everything perfectly and might expose her.

At the facilities my Mom has been in recently (due to recent falls, hospitalizations and rehab stays), we have seen staff touch residents (hand shaking, fist pumping, back rubbing) without gloves on during non-caregiving activities.

We have seen staff remove their masks and within inches of my Mom’s face speak into her ear (hearing impaired).

Facilities promise they will do everything they can to keep you in touch with your loved one. However, that was not the case in our experience. Getting ahold of a staff member after 3:00pm weekdays or anytime on weekends was a joke. One facility did not have a staff member dedicated to answering the phone and it was up to the aids who could not be bothered.

I just wanted to mention these things because what you intend to be a respite situation could turn into something entirely different.

With any luck it would turn out ok, but I think it’s good to be informed about what could happen.
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Reply to PAH321
NobodyGetsIt Aug 10, 2020
Dear "PAH321,"

Wow - What an excellent response and you are so right when it comes to the first impressions of a facility. They use every marketing tactic they can think of to make it all sound too good to be true and guess what - it usually is too good to be true to some degree.

Also, my mom had a window facing the courtyard at her previous facility so I did just as you mentioned when we looked for a new one in May. Now, her apartment has two windows!

You said the worrying, in essence, follows you if you place them in a facility and I couldn't agree more with that statement as well.

Like I said, great advice so thank you on behalf of all caregivers!
What ifs, coulda shoulda woulda. They will paralyze a person from acting as they know they should. You can get CV-19 anywhere. Don't let it stop you from doing what you know would be best for all of you.
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Reply to gladimhere

If she dies one way or another you will feel you should have gone the other way. The ideal situation is that she stays with you but the reality you only know. Be honest with yourself and think if you are physically, financially and emotionally prepare to provide the care she needs. If you are not allow others to care for her.
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Reply to ERICA1

Same here! You are not alone.
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Reply to ERICA1

Imho, you have possibly a good opportunity at hand IF the Novel Coronavirus was not a part of the decision to go with the Memory Care. However, because it's still running rampant, you no doubt should continue with in home care.
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Reply to Llamalover47

I am very sorry to see your mother in this situation. What have her doctors advised? Don't feel guilty for getting your Mom the care she requires beyond your capabilities. You just have to use judgment beyond Covid risk. And, talk with a social worker for arrangements. From what our readers say, it's time for her facility placement.
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Reply to Patathome01

Sorry that you are in the situation we are experiencing today. We definitely are in a lose-lose situation. My mother was in a nursing home about an hour and a half away. I hated having to leave her there, but I physically could not care for her. Luckily she was very pleasant and because her memory was gone she really didn't know what was going on. She was healthy and on no medications, 90 years old. The problem I had with the covid lockdown was not getting in to see her. I did do facetime with her, so I was able to physically see how she was doing. The facility did have a wing that had covid patients, but I was assured that everything was separate. Still there were a couple of patients that died from covid in the memory side. I happened to notice an extreme change in her appearance and response during one facetime call. It took me 5 days to get someone to address the problem and I ended up calling hospice and they took immediate action and got me in there. Unfortunately she died 3 days later. This virus has taken away our eyes and ability to fend for our loved ones. It's to late for "would have" "should have". My advice for you would be if you be if she goes into a facility, be more vigilent as to being able to observe her and do not hesitate to to act on anything you feel doesn't seem right., but if there is anyway you can keep her home until this virus passes, I would.
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Reply to SharonZ

Please consider how COVID is transmitted: usually airborne mini-droplets when somebody coughs or sneezes or talks or touching infected surfaces and then touching your face. Staff in memory care facilities have been trained to prevent transmission of disease. Facilities have cleaning protocols, distancing protocols, and supplies on hand to prevent transmission. Most places are requiring residents to quarantine for 10 days to make sure they are not bringing COVID in. Visitors are not allowed so they do not being COVID in. So, I am fairly certain that you mom would most likely NOT get COVID in a facility. That being said, if she does get COVID it doesn't mean that she will die. Being elderly is a risk factor for more serious disease, but having other chronic health problems are more of a risk factor.
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Reply to Taarna

I agree with you Dementia steals a persons identity of the person you once knew. After 30 years with my now husband . I to stopped the little help I was getting from a VA caregiver because of this virus . Have you considered Hospice care for her . Hospice is no longer just for people who are terminal They are wonderful and take such care of people. It’s so difficult but my husband would never survive having it. He has so much wrong with him . He had multiple strokes alcohol induced . And with in a year was in pull ups like a one yr old . Now he doesn’t talk much , he had a heart attack . 40% use on one side of his kidneys and 60% on the other. He has a 7mm aorta aneurism. He had diabetes. He’s blind in one eye and now loosing sight in the other . I bath, shave, cut his hair , change him and dress him 95 % all on my own .
It’s such a struggle with no help . The VA in Tx only gives 30 days a year and 6 hrs at a time to have a caregiver to help me. Taking care of a dementia relative is not easy. I bought cameras where I can watch him while he’s in bed sleeping .
He doesn’t want to eat much at all so the Dr put him on Glucerna and he loves yogurt. I was so worried but the Dr said people are living just on those and doing good. He’s not lost weight and it seems to work good for him all his blood work was good. You will always love and want the best for your Parents but also know they want the best for you. No one can go visit their loved ones in nursing homes now. I wish you the very best . Pray for her God is always there to listen and help. God bless you and keep you all safe in his healing hands . 🙏🙏😍❤️🌺🌷
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Reply to Heartaches7849

I would not put my loved one in a place during the covid.

She would be safer and happier staying home with people she knows and loves.

You can get care at home help from her Ins Co for helping bathe her a couple times a week and therapy a couple times during the week and will provide a Nurse to check on it.

You will have to hire a Caregiver for spending the nights out of your own pocket and if you look hard enough find someone for $8 - $10 Hr.

You might also adk her Dr if she can take a rx to help her sleep thru the night.

When I was helping with my 96 yr old Dad 24 7, I had to learn to sleep when he slept, like I did when I had a Baby.
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Reply to bevthegreat
ERICA1 Aug 7, 2020
Dementia patients dont sleep. That's the issue.
I am in the same situation as you with my 90-yr-old mother. Her dementia has quickly worsened to the point that she seldom knows where she is even if it is in her own home. I think sharing care with my brother where she spends two weeks at his home and two weeks with me caring for her in her own home only adds to her confusion. Also, her eyesight is failing and she is very hard-of-hearing.

Last week I contacted a facility that only cares for dementia patients. It has a good reputation and actually has 4 openings. I think it is outrageously expensive, but have been assured by others that their costs are "in range." However, I absolutely refuse to pack my mother up and take her to a "strange" place and leave her, especially with the lockdown situation where I would not be able to visit her once she is there. In my head, I see her alone and frightened and so confused about why she is now in yet another place! I don't think she would do well. I know it won't be long before she will have declined to the point where I can not care for her. I already don't sleep much at night, trying to be sure she is not up and wandering around with her walker.

I, too, have concerns about bringing in outside help in the Covid world. One part of me knows that I need to be doing my homework and finding a "good" facility but Covid makes everything so difficult. Your idea of trying out the respite care aspect is interesting. I always wondered about having a "trial period" where you could determine if the facility was a good fit for a loved one. I know the facility in which I am interested offers respite care but I'm not sure for what amount of time.

I absolutely hate this disease.... and Covid, too!
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Reply to texasrdr22

"Trying out" a memory care facility is not a good idea. Your mother either needs full time care from a team of 24/7 care givers or she doesn't. If you place her temporarily, she's likely to complain and want to come home immediately, and then you'll yank her out of there despite the fact that she needs the care she's getting in that environment.

Your mother is just as likely, if not more likely, to contract the virus at your home as she is in a Memory Care home. The precautions they take are under the auspices of the Dept of Health and even if the virus does occur, the patient is isolated away from the others. Life happens, there or in your home or anywhere. God decides when our number is up, not us. We mortals have no control over that. Your mother either needs full time professional care or she doesn't. You second guessing yourself isn't going to help you OR her; it will just confuse the situation further. What's best for MOM? That is the question to ask, not 'what if' this that or the other.

If you can no longer handle your mom at home, which is what normally happens with advanced dementia, then it's time to place her. That is what's best for the loved one, imo, because they get care 24/7 from teams of people trained in that field.

See what their rules are about visiting; at my mom's MC, we can schedule outside visits or window visits which we do every Sunday. It works well and we get to see one another w/o incident or worry.

I know how hard this all is; try not to overthink it. Say a prayer and then leave it in God's hands, you know? Your goal needs to be maximizing EVERYONE'S comfort and quality of life here, not just your mother's. Her life is not the only one that's important; ALL of your lives are equally as important. Many care givers get lost and wind up thinking the ONLY life that matters is the elders', and that's not true. Know without a doubt that she WILL be well cared for at the MC, if you decide to place her, and leave it at that.

Wishing you the best of luck, whatever your decision turns out to be. Sending you a hug and a prayer for peace
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Reply to lealonnie1

I would just say, as part of your analysis, don’t move her with the idea that it is a temporary respite if she has dementia. Moving is REALLY difficult for a Senior and the adjustment period can take many months. Even in the best facility there will be bumpy times when you will be riddled with guilt and want to take her home. Once you move her, you have to be willing to stick with it through the hard adjustment period. Respite stays are for those who just need some temp help but can go home again. If YOU need a respite, arrange for some help to come to you.
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Reply to MammaDrama
jkm999 Aug 3, 2020
You are right that it's an adjustment period and you just have to stick with it. I always liken it to sending your child off to first grade. You know you have to do it but neither of you are happy at first.
Dear "cgblues,"

There is no guarantee with "anything" in life including whether we will live to see tomorrow regardless of whether we are young or old, in good health or poor.
I think you have an opportunity that as you stated, would not only provide you and your husband with a respite but, give you the ability to see if your mom would be happy at that particular facility without a full commitment.

In my case, my 95-year old mom who has Alzheimer's lived in an AL facility since early 2015 right up until the pandemic happened. The facility was in lockdown since March 13 and one month later, my mom was near death from severe dehydration and contracting COVID-19. Her room faced an inner courtyard where we could not "window visit" so my husband bought her an iPad in order for us to "see" how she looked as that would be the first clue if something wasn't right. It worked fairly well until she was no longer able to get to the iPad from her bedroom to the living room where it was next to her couch.
After her hospital stay, she was transported to a rehab facility for almost three weeks giving us time to find a new facility which was extremely difficult at best. Once, we finally found one that would allow someone who was recovering from the virus, we moved her into their memory care wing. She was no longer able to walk, dress herself and had lost 20 lbs. from not eating which meant she now qualified for hospice care involvement. That being said, the facility amazingly had no COVID cases and wanted to keep it that way so they quarantined my mom for two weeks upon arriving from rehab and she was tested again twice - once to be allowed to move in and again to be taken out of quarantine. A month later, the facility got their first COVID case which was someone in the memory care wing (they did pass away a week later). This facility is well run and they really handled everything quickly along with sending us all letters with updates. They decided to have all residents and staff tested every week for two weeks until they were free of it which they currently are.

So even under the best circumstances and being in a great facility - things can still happen. Everything is a "risk" in life and I hate to say it but "fear" can really be our downfall in what otherwise may give us something to help things be a better situation for all involved.

I understand the "would of, could of, should of" but, at some point we just have to remember we are doing the best we can with any given situation and at any given time. We can never control any aspect in life as much as we may want to. Caregiving is and always will be a learning curve as well as this journey of life.

You both seem to have a great opportunity here - I hope you don't miss it. Because if somewhere down the line the virus gets worse again, facilities may not be taking in new residents. That's somewhat where we were when my mom was released from the hospital and rehab facility. We kept striking out trying to find a good, new place for her as I was not going to be sending her back to her previous facility if I could help it. They had a lot of cases as well as deaths - over 22 deaths and there's only an 85 resident capacity.

One last thing, you will never be able to predict the outcome if your mom were to get COVID. At 95, I thought for sure she was going to die in the hospital and that I would never have seen her or been able to say "goodbye." She survived and other than losing her strength, I see her outside her window frequently and she is doing as well as can be expected! Good luck to you all and I hope you will share an update!
Helpful Answer (5)
Reply to NobodyGetsIt
cgblues Aug 3, 2020
Your mom surviving Covid at 95 is an incredible story!!! I can't believe how much you have all been through and am happy to hear you are able to do window visits with her again. :)

You saying this... "I understand the "would of, could of, should of" but, at some point we just have to remember we are doing the best we can with any given situation and at any given time. We can never control any aspect in life as much as we may want to. Caregiving is and always will be a learning curve as well as this journey of life." ...really hit home for me. We are, right? Doing the best we can, trying to make all the right decisions and everything is part of the learning curve as no two caregiving situations will ever be the same. We cannot predict nor control outcomes for a lot of things in life.

Thank you for taking the time to respond and I will share an update. I submitted quite the list of questions and concerns to the facility so we will go from there.
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I can see how this would be a very tough call for you. You are probably exhausted and pretty desperate for some relief but Covid would be on your mind all the time. It's been easier on those of us whose loved ones were already in assisted living or memory care to accept the risk of Covid. Your other issue may be that you wouldn't be able to visit your mother once she was in the facility. At my dad's assisted living they are still on lockdown - no visitors - and by doing that have managed to stay Covid free. My dad was already a resident and settled in so although he complains that he can't go out and we can't visit he is comfortable in a place that is familiar to him. How would your mom, and you, feel if she were to go to a memory care home and then had no visits from you? Would she feel abandoned? Would you feel guilty? In your current situation I'd probably try to get a night attendant at your home until the Covid situation is more under control and the facility allows visitors. I know that having someone in your home is a risk to you and your husband but it is actual less risk to your mother as in a home she will be exposed to many staff members who do go home a night, not just one person that comes to your home. This must be a terrible time for you with the stress of caring for your mom and Covid at the same time.

Know that whatever decision you make it is the right one for you and your family. Don't let people guilt you about it and don't second guess yourself. We are all just doing the best we can with the information we have at the time.
Helpful Answer (3)
Reply to jkm999
cgblues Aug 3, 2020
Thank you for your response!

It's actually great that your dad already had an established life in a facility before Covid. Even though he is cooped up, at least he is safe in familiar surroundings with friends. That's huge.

We have been endlessly weighing all options to come up with the best solution for us at this point. We had initially wanted to do in home care but finding the right caregiver was a challenge. And in a very short period of time, her dementia has continued to worsen. Initially, it was a lot of hallucinating and delusions, mainly during the night and now it's day and night, along with constant confusion and disorientation. No matter what medication we have tried, she never sleeps through the night and will come out of her room and wake us up. So life continues to get more and more challenging, which is why we started to look into memory care options. The facility we found is in lock down, however, it has an outdoor park and encourages "outside visits" from family members. I still suspect her anxiety will kick into high gear and she will be trying to call me all the time but hopefully the activities will keep her occupied.

The bulk of the questions we submitted to them have to do with Covid so once we get those back, we will take it from there.

Thank you for the support!
Find out what the facility is doing to protect residents from COVID. If you think their rules are reasonable and responsible, then I would go ahead and get some well needed respite. If their rules are lax, keep looking.

It is not possible to completely avoid risk. It is possible that you or your husband could bring it home and give it to your mom. Even with being careful, these invisible germies are sneaky.
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