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Supporting those in hospital/care facilities with visitor restrictions
Many long-term care facilities and hospitals, at the urging of CDC and State Departments of Health, have limited or outright banned visitors during the early days of coping with COVID-19. Those which have not yet will surely do so in the near future. This is certainly a prudent reaction, both to protect vulnerable populations, and to allow our health care providers to focus on patient care.
The downside, of course, is that isolation itself is creating a risk to the well-being of those who rely on visitors for connection to the outside world, and for help with day-to-day tasks that staff is often unable to provide. A further complication is that, in most facilities, communal activities and meals are also suspended to reduce contagion, so our loved ones are even more isolated.
One obvious suggestion, of course, is to communicate by phone, or if the patient is able by video chat. Another is to send cards and short notes often.
The harder question is how to provide stimulation and assistance. For example, for years my sister and I did laundry, paid bills, generally straightened up for our Mom - I don't know who would have done it if we couldn't go in - certainly staff are already stretched to the max. I have reached out to my daughters - both RN's, one with 10 years of elder care experience, one in hospitals - for their ideas
What ideas or suggestions do any of you have? I'll report back any suggestions I get from my girls.
Sue
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Amazon is offering two months free on Kindle Unlimited. After that there's a charge and you can cancel anytime. My local library offers e books and audio books we can borrow online.
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3 ReactionsThis suggestion came from member @itecato another Covid-19 discussion, but I think it is worth repeating here.
"If I may make a very mundane suggestion, it would be that hospitals should try to make sure that patients can charge their cellphones and any devices that can connect with whatever WiFi is available. In my recent experience I have noticed that some hospitals don't seem to care if patients can do this, and it can make a patient feel quite isolated and helpless if they cannot communicate with family or other acquaintances. I know most facilities have landline phones in their rooms, but in this day and age, who has memorized more than one or two important phone numbers?"
So here is something you can do to support your loved ones from afar.
If you have loved ones depending on their devices who may not know important phone numbers without them, please prepare and send a list so at least they can use a landline if needed.
If you have loved ones who may not know how to charge devices on their own, prepare a simple instruction sheet & an extra charger for each device, place in a ziplock bag, clearly labelled with the person's name & room number, name of device it is for, and your name & number in case there are questions. Include instructions how to recharge and restart the device if the battery has gone completely dead. Deliver this to the facility and the staff will thank you!
Finally, that poster mentioned that their hearing aid died, and they had no replacement batteries. Please be sure your loved one has an ample supply available and knows who on the staff is willing and able to change the battery if he or she cannot do it.
All of these suggestions are meant to ease feeling of isolation for our loved ones.
Sue
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6 ReactionsWell, Mother Mayo just did it...it instituted draconian measures. No one but the patient gets through their doors. Whether your loved one is having an outpatient procedure (line surgically placed or CART-T infusion --with the complications that often follow within an hour of the infusion) or admitted to the hospital due to the extreme complications that can follow CAR-T, they are on their own.
As far as the caregiver? Tough. You too are on your own ... to wonder, wander and worry.
While I realize there are many ways one can support the loved one from a distance, who can support the caregiver? It has been a tough 11 months getting to this point, then, at the most critical time for both us us, the caregiver is ripped away to become a slave to a phone call from a busy nursing staff.
After 11 months, I have nothing left ..... and what was left has been torn away.
My plea is HELP!
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1 ReactionPlease ignore prior post. Mayo clarified parts of this for me. Hospital still a no-go, as are specific units, but as far as outpatient tests, they'll let you in. Unfortunately, the specific units are those where CAR-T and stem cell transplants are working. I understand it intellectually, but not as easily emotionally.
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2 Reactions@ruttgerbay I completely understand your outrage, call for help and anxiety. It's scares the cr&p out of us when we can't be there for our loved one. It makes an already terrifying experience like CAR-T therapy become even more anxiety-ridden. Not what you need as you try to be the calm one and the pillar and the rudder for your wife.
I'm glad that it was quickly explained to you that you can accompany your wife.
Effective Monday, March 23, outpatient clinic patients may have one individual accompany them, with consideration for special exceptions determined by patient care teams.
Here is a link to all the details of the Updated visitor policy: Mayo Clinic limits number of visitors during COVID-19 response https://newsnetwork.mayoclinic.org/discussion/updated-visitor-policy-mayo-clinic-limits-number-of-visitors-during-covid-19-response/
Are you in the CAR-T unit now? How are you doing? How is your wife?
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1 ReactionJust a thought: I'm probably safer than most Mayo staff. For the past four months, the only place I've been has been home, at Mayo facilities and once a week to the grocery store, wearing an N95 mask due to her being in neutropenia. That said, well, I can probably pass the "door test" at Rochester.
And thanks for asking about my wife. Fairly tough shape, tired, run down, barely eating. Looking forward to the CAR-T and not afraid of being sequestered in the Gift of Life House, in that she's had a lot of practice since this ride began last June. We go to Roch tomorrow for a couple of tests, Thursday a PET scan followed by several consultations with oncologist, social worker, pharmacist, and a couple of others. Friday she starts the pre-infusion chemo. Then the infusion... and apparently the separation should she have any of the likely complications.
How am I doing? I'm used to be isolated. so that's no big deal. Other than that, I'm frightened about the outcome of the CAR-T (hey, we've been married 57 years and don't want it to end right now), frustrated by the pending separation, but thankful as heck that we have three very caring and helpful children who are trying to help their mom and dad through this. But basically scarred because everything important is out of my control and I feel helpless. Helpless but not totally hopeless.
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5 ReactionsGood morning. When my husband was diagnosed with his first autoimmune disease, the Dr tried strong steroids which normally works. I remembering thinking “why isn’t he responding?” “This can’t be happening” “ I can’t fix this” One day healthy, never sick, the next day hospitalized. After a month in the hospital, the Dr decided to try a infusion that is used for cancer patients. I, like you may have, had limited/no visiting. I remember telling myself that whatever happen I would do what was my part in helping my husband. He had 8-9 months of treatment, isolated from the physical world due to being so fragile. We fought this together. It sounds like you are prepared and focused. I’m happy your children are there to support you both. That’s shows a strong and loving family.
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