@knowstuff, I am very sorry for your sister. No help with the beds other than sending cyber hugs.
@MaineLonghorn ugh, I am sending you all the strength because the carousel you are on sucks.
I sat by my sister’s bed for 3 days when she died so that her DH could get some rest. She died in the night and I had to go wake him up. Then I went out to the porch to call people. My mom was on her way and landed that day . I know my sister was leaving before she got there, we had had a heck of a time keeping her away as long as we did per my sister’s wishes.
And when Mom died in Memory Care, my brother came down and we took turns staying awake and dozing though the night. I was glad again that I was the one awake, but had some difficulty in waking him up to say she stopped breathing I think. But She was peaceful and it had been so hard and long for her in dementia that we were sad and glad both.
Thanks, everyone. @esobay, “carousel” is a good term for it! Maybe “rollercoaster,” too. Sister reported that Dad was looking better last night, and this morning the doctor told her that there does not seem to be more fluid collecting. He said Dad might be discharged tomorrow or Tuesday. ?!? That seems premature. Our advocate said she doesn’t think that’s realistic and will stay on top of the situation.
I agree that it seems premature from
All you’ve written about your dad’s journey and am glad the advocate will stay abreast of the situation. Thank goodness you hired the advocate when you did!
When I did training to volunteer for hospice, they told us that people often die when loved ones are out of the room.
The issue of advocacy is an interesting one. What do people do if they cannot do it themselves (or hire someone)?
This is a small example but…this past week I was in the ER for 7 hours with my mother, whose small skin tear would not stop bleeding. Her room looked like a crime scene. The visiting nurse bandaged it, I went out for an hour, came back and it was saturated, I bandaged it, another hour, saturated, so off to the ER.
I called the anticoagulation clinic that does her Coumadin dosing. Her INR was 4.2, way too high. The clinic said they would skip a night. I called them back and said, please skip two nights and they agreed, which meant none Sun,. Mon., 2 mg Tues Wed. but they said that Thursday night they would do extra (3mg not 2) and test on Friday. I called them back and said I was concerned because in the past her INR has taken awhile to come down and I requested a test Thursday morning before the bigger dose. They agree. It was sitll 3.0.
I find I am constantly manipulating the medical system or even acting like a protective barrier. I just wonder what people do…
It’s sad but you have to take measures and care sometimes in your own hand. BTW - put on a ice pack with a wash cloth on things that don’t stop bleeding and raise the limb if possible like 15-20 minutes.
@compmom, I think what people do is they die. Small problems spiral into big problems because health care is not really patient focused no matter what your plan advertises. People on this thread extend their parents’ lives by years, and improve the quality of those years.
@knowstuff I did the ice pack and elevation of the limb with compression for an hour. If your INR is 4.2 these things don’t help that much. There is a type of bandaging with clotting factor embedded, and that helps. As would vitamin k but noone wanted to do that because it throws off the testing.
My SIX sibs and I feel we have our hands full trying to help our folks stay as healthy and active as possible.
Family members have had to be at bedside 24/7 when there is a hospitalization to be sure the patient remains as calm and cooperative as possible (so no restraints and worse are needed).
Family members have to contact doctors after discharge to ask MD to order medication and equipment to keep patient from immediately returning to hospital.
Family members have to pick up the medications, put the pills in marked pill box, administer inhaled meds and hire a staff member to help administer morning meds. (Mind you, they are living in the “deluxe” continuing care community in an independent unit.)
Family members help care for to folks, including grooming and extensive showering assistance. Family members check to be sure the hired staff person actually administered the morning meds and showed up!
Family members provide all transportation and attend all visits with all providers. Family members have extensive dialogue with medical providers.
Family members follow up with durable medical company to be sure the equipment prescribed gets to the patient, including multiple phone calls and driving to pick up equipment that was promised and legally obligated by Medicare to be delivered to patient!
If the Family couldn’t do all of these things, the folks would be frequently in and out of the hospital and likely in memory care or skilled nursing or dead.
I have the bandaging that has the clotting factor, as well as the powder. Since this had never happened before to this degree, we didn’t have it on hand at the time. I asked the MD if we could avoid ER by purchasing these and she said no. Now I know.
@compmom, why not type up a list of all the things that need to be done for your loved ones and tell brothers it’s too much for you. Which ones will they do or at least help with? Your parents raised sons and daughters. Caring for them can and should be shared!
We try to get all family members who are able to help so that we share the load and resentment doesn’t build that some folks are not pulling their weight and others are overwhelmed; so far folks are all stepping up as they are able.
I send emails to my brothers with all the details, a few times a week. One just moved across the country and the other is a partner in a law firm. After a couple of years, I have been paid for some of my work with my mother, to make my mother feel better, my brothers feel less guilty and so I don’t feel like a martyr. Not a lot, but it does help me feel less downtrodden. It also helps when, say, my mother wants to do her checkbook, and I can remind her, “Remember, you hired me as your assistant”?
When I wrote “tell my brothers” is is just because despite all my details, they retain the idea that assisted living does medical care and coordination, that you can sit back and trust the medical system, and that anything else you do is just voluntary. One brother says all the time, “Can’t they do that?” or “I trust the doctor.” I have to explain to him almost as often as to my mother with dementia!
There is a strong gender bias for elder care. I see it all the time. In fact, we have a joke about the daughters’ club at AL. Everyone just assumes that the daughters do this kind of care, in our family and many others. When I went away, I hired someone to do the colostomy because my brother could not do it.
That said, if I were working, I am sure we would just hire someone, maybe even a consultant, to handle all this, including the colostomy. I am trying to preserve money for my kids in the long run by doing it myself, but am always reconsidering As time stretches on, I think we all need to think of new ways to preserve ourselves.
I think it’s fair for the family to pay the caregiver. I have a friend with 4 siblings. They have all agreed to an hourly wage for the care-giver daughter in law and a monthly stipend for the brother handling finances for the parents.
It does seem unfair for the estate to be divided equally among all the siblings while someone like @compmom work so hard every day. In my case, I don’t have siblings but the estate gets divided between myself and my brother’s heirs who rarely visit.
What is a fair way to compensate those of us (mostly daughters) who do all the work and therefore, sheltering the family so they don’t even realize all that you do?
This is a difficult issue. Especially if caregiving makes it hard to commit to work. It feels funny to be paid, at first, but it helps everyone, eldelry person, caregiver and siblings. I get a fairly modest amount and increase it by $200-500/month if I do hospital duty or something intense over a month’s time. I make sure my brother’s know.
I also email my brothers, as I said, so they know what is going on.
I met with a social worker this week about how to lessen the burden a bit. But then today the cardiologist asked me to give her PRN additional diuretic because her heart isn’t doing well, but the added meds affect her kidneys. So he needs someone who can legally exercise judgment and do the meds as needed, depending on swelling and kidney tests. AL nurses/LPN’s cannot exercise this kind of judgement on their licenses. So…
In addition, my mother had called her long dead financial manager and been transferred to the one who is alive (!) to get some money to give for Christmas. She had done some math in her ledger (which is a dummy and only contains her bank balance) and got a total balance that was 1% of her actual total!! So she thought she was broke. I have P of A and the manager called me to check and I said no. Then I had to talk to my mother about it. Ugh.
Every day there is something, right? And I don’t even live with her. I can drive away, and I can do light duty when possible. What about those of you who are living with your person? I don’t know how you do it. Our state actually pays families who keep their elders in their home.
I am considering hiring a non-licensed person once in awhile or even once a week to do the colostomy and PRN meds. They could tell me how swollen she is over the phone. Making some resolutions. I am almost 70 myself!
Compmom, my 99 year old mom with dementia lives with me and I have a live in caregiver six days a week. It is difficult, but she is healthy so I don’t have to deal with all the medical issues and personnel you do. I admire your dedication. I have a hard time dealing with the ick factors of caregiving. Note that it didn’t bother me with our kids, but it does now. My mantra now is you can touch a lot of things if you have rubber gloves! But yes i wonder what’s the better of two evils, a couple of glasses of wine in the evening or antidepressants!
