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My Dad is in late stage dementia. Anyone banned from seeing a loved one can relate. We were going to his ALF daily and doing the feeding and companionship as there are 24 other dementia patients and they can't always get to him. During this so far 15 day ban we were told how much he is declining, not eating or drinking, immobile and nonverbal some of which is the progression. Today we got to see him through a screen for 15 min. During that time he heard and saw me and my mom tried to get up and showed signs that both care workers said hasn't happened in a while. Anyone else going through similar? Should we push..we are the feeders and he clearly needs us for his well being. We are not causal visitors....spoke with director if he was on hospice (which may happen soon) then it's essential? Late stage dementia families need help. Screen us the way you do the worker.

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"We pose the same risk as a care worker." Yes but if they let you in they would open themselves up to pressure to make exceptions for everyone else who wants to visit. The increased number of outsiders increases the overall risk of exposure to the residents and increases the amount of attention the skeleton staff needs to put attention on cleaning and exposure prevention. There is just no good answer in this situation. You don't say what state/city you are in. It is possible the threat may peak in a week or two, then things may relax a bit. No one knows. I'm so sorry for your anxiety. He is blessed to have such a caring family! May you gain peace in your heart as this situation rolls through.
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Anchors1981 Mar 2020
Thank you for your kind words and I certainly wouldn't want to put others at risk..our circumstances are very different than just a person who needs AL or can understand the situation somewhat. And again we are not casual visitors. We go daily to feed him (it takes an hour spoon by spoon) and do everything the care managers do. Not only for his security but because his needs were greater than what they could provide its considered "group care" The care workers consider us and asset and like family. They are struggling to give him the same level of care .He is borderline in need of hospice. Determination to be made Monday. From what I understand the allow who they deem "essential" and hospice residents are allowed one person.
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I work for a huge hospital ( not an elderly facility) and earlier this week we went to one visitor per pt ( I work in the ICU). Other visitors could not even be IN the hospital,, they had to wait in the garage in their car or outside. Today we made the horrible and painful decision to allow NO visitors,, unless some one is passing or in the pediatric side with one parent there.. ( because the RNs there can't take care of the children AND keep them entertained.) Although we all see the need for this as the hospital is full, and we don't know who is carrying what in.. including us, it was heartbreaking to watch. I feel for you, but please know this for everyones best interest. We don"t want the pts to get sicker, and no one wants to see the caregivers dropping like flies. We had several RNS go home today with symptoms, and I can tell you almost all our DRS are wearing masks, as are we.. and unfortunately we need to wear the same mask all day, from PT to Pt,, so this is real! My clothes are in the washer as I speak,, because I am terrified that I will bring this home to my 89 YO frail mom who just got of the hospital a few weeks ago. I feel if it becomes end of life they will probably let you in, we are making exceptions for that.
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Anchors1981 Mar 2020
I don't know what they will allow but I did read that end of life is considered "essential" and that's where he is possibly headed according to them. This may be protecting them from getting the virus but with a short staff and 24 other residents..the ones who have extreme needs such as taking one or more hours to hand feed are clearly not being able to be catered to. (Dad) . I'm sure there are many others in my position who are experiencing similar scenarios ..10lbs loss in 15 days. If family are not allowed and the person needs extreme hands on care that they are struggling to provide and they can not have anyone else to come in and provide care? Even volunteers? So the solution under the guise of "protection" is to let what few staff they have burnout?? Let the person get sub par care?Anyone who has a LO in a facility and you aren't involved in their care as much as we are..you should check in. I'm sure I'm not alone in this ....nor is his facility the only one having staffing issues now for the most vulnerable..If the goal is protect them and care for them ..how can that be accomplished with skeleton crews ? The point of my post and inquiry I am trying to make is there are exceptions to this that need to be considered. I'm 100% sure we are not the only family out there experiencing this. An all out no exceptions complete ban on extreme cases in ALF and Hospice (not regular Nursing Homes not regular AL, Not Hospitals) when the patient needs one in one for survival is at risk for passing away or can pass away should have been taken into account. That is my point..that is what we need to express to the Government , to the Healthcare Industry...Especially when food service workers are considered "essential" and not part of this state wide ban.
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This will be pointless before very long, because there are only so many staff you can isolate before you don't have a functioning staff. But we're not there yet.

Are you in touch with any other relatives of residents at your father's ALF? I think this might be a really good time for family members to start a support group. If you can get together responsible people who are prepared to commit to regular time and a crash course in infection control, you have the beginnings of a volunteer force. This is one of the possibilities the UK government is exploring for keeping our residential care centres running, especially if significant numbers of staff actually fall ill (as opposed to being possible carriers).
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Anchors1981 Mar 2020
Great idea. Aside from my mother and I we have seen only 2 of the residents family members in the 5 months he has been there. The dementia unit is in a separate wing from AL besides. Sad but true. The care managers have commented we are the only family that goes daily. My mother actually applied for a volunteer job there. That is how desperate of a situation its become. Anyone who has a similar circumstance can relate. Again we aren't casual visitors and he is almost at the end of life. They are having a doctor screen him Monday due to the signs and the huge decline in 2 weeks. Its terrible.
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I'm so sorry to hear this Anchors. Please keep in touch if it helps at all - I know we'll be thinking of you.
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Anchors1981 Mar 2020
Thank you
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My mother started Hospice last week and has maybe 1-5 weeks remaining. Hospice RN advocated for me to visit, as I'm the only one in the family who visits her, and I'm the POA, and she is rapidly declining: sleeping most of the day; not eating or drinking; not taking her medicines; unable to speak. She has end stage dementia; confused; scared. The NH is arranging for a single room so I can visit, which should happen within days. Also, funeral home that will handle her arrangements post death recommend a private service with less than 10 people. Not the good death or tribute that I or she had hoped for. Feeling very sad and helpless.
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Anchors1981 Mar 2020
i pray for you as we are now in the same boat. My mother has chosen comfort care after they sent him to the ER. He has pneumonia, kidney failure and dehydration. We still cannot see him yet. They allowed her Today to look through the glass. I posted another question as I'm having such a hard time. Peace be with you. Thank you for replying
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I have not seen my husband, in rehab for mobility issues, for two weeks. I’m not allowed farther than the front desk with his clean laundry. He is getting good care, everything he needs. I don’t need to do anything for him like you do for your dad. But after 46 years of marriage, it’s darned hard. The dog isn’t a great conversationalist and the cats only come out to be fed.

There is simply nothing to do but accept that we can’t do anything but follow the federal mandates. Sure, it sucks. I got laid off from my job at a daycare last Thursday. My son texts every day to make sure I’m doing ok. He’s worried.

Here in Cleveland, Ohio, some hospitals are allowing one visitors (after they’re screened). Special dispensation may be given for end-of-life or hospice care. A local facility hasn’t gotten their mail since Tuesday because the postal worker refuses to let his temperature be taken. It’s a strange world now.
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Anchors1981 Mar 2020
Prayers go out to you i can relate immensely
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Dad admitted to hospital this a.m. seems the virus may have found its way in there after all even with the ban.,, High fever and unresponsive taken by ambulance from the facility this a.m. 5 other residents as well. Just keep us in your prayers please.
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I understand your frustration and concerns. It's not just about screening family "the way you do the worker" but also about the fact that you are not a worker - any PPE is already in short supply - and you may be a carrier and show no symptoms. Self isolation for 2+ weeks is necessary to protect the public and health care workers. If the health care workers get sick, you are putting everyone in your dad's care home at risk. I am sorry for you and your family.
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Anchors1981 Mar 2020
The workers already stated people are calling out sick and they are severely understaffed..so that goes for all facilities..high rate of neglect is just as risky as the virus!! They could also be carriers and not know it. Do you really think they aren't exposed to the outside world? They don't grocery shop? They don't get gas? They don't see friend and relatives? Can you guarantee that? No you can't...My mother is 76 years old and goes between the facility and her home that's it. We are not casual visitors, we provide the care. DAILY. For 9 years we did home care before we had to make this heartbreaking decision...I guess when he declines to the point of hospice then we can see him!!! My husband is a grocery clerk...considered "essential" enough to have to work everyday and be exposed to food and people. It's a joke! People who have families in dire need or on hospice should be allowed in after testing for it and daily screenings. We pose the same risk as a care worker.
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I understand your frustration because my mother is in Memory Care and was put on Hospice this week. Only the Hospice nurses and facility staff can go in to see her, not the chaplin nor the social worker. As we all know the nurses and CNA's are being pulled in numerous directions. My only saving grace is that I have an Echo Show so I can call her daily. It is hard seeing them decline and this feeling of hopelessness. I too am not sure how much the facility staff is pushing her to eat. What a terrible time this is and to deal with this on top of it. All I can do is pray. I wish you and your family the best.
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Anchors1981 Mar 2020
My heart goes out to you ❤ and thank you for replying. I'm not sure what state you reside in but from what I understand you would possibly be considered "essential". Praying for you and thanks for the suggestion. We are going to do our "screen visits" until Monday but even then based on what you are saying we may not be able to see him. Check with the facility on that though. ❤
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Remember, when you want to run around screaming (I think we're all feeling a bit like that, aren't we?), that this situation is *temporary.*

Because of the uncertainty we can't know how long temporary is, of course, which makes it harder to keep that in mind; but people are already organising themselves and we do know that we will get things sorted.

Humans are clever, cooperative organisms. Work with others to find a way through.
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Anchors1981 Mar 2020
Temporary sure...been 15 days with state wide ban now signed a bill for 30 more ...he could easily pass in that time frame. How long can a human survive without adequate food and drink? Proper care for late stage? I would love to work with others and find solutions....government stepped in and now I must abide by facility rules. What solutions? Cannot even hire a "essential health care worker" to enter and feed him
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