Now that the holidays are over, I can finally take some time to share an expeience that happened right before Christmas. We had planned for months to take our granddaughter to New York to see the Rockettes and the sights. The non-refundable tickets for shows and train had been purchased. Before we left, I went to see my parents, made sure they were okay and that their medicines were all in order.
By the time we were on the train, I had received several phone calls from the aide that my mother was having some bleeding. I told her to call 911 and go to the nearest hospital. As frequently happens in Emergency Rooms, things took a long time and I kept getting updates from the aide as we traveled north. The biggest complication came as the time for the aide to leave approached. She told me that ordinarily she could stay longer but she needed to leave on time to pick up her children.
My father refused to leave the hospital and we didn't know if my mother was going to be staying overnight. I kept going to a corner of a car in the train to call the aide and the hospital for updates and to try to reach one of my cousins to arrange transportation for my father.
I reached my cousin's husband when we were passing through Philadelphia and he said it would be several hours before they could pick up my father because their children were in a Christmas pageant that night. By the time we pulled into Penn Station, NYC, my cousin had contacted me to say she would pick up my father after the show and make sure that he got his dinner.
My challenge at this point was conveying to my 94 year old father that he would be picked up by my cousin and that he needed to stay in the waiting area by the ER. My mother was kept overnight with a URI.
The next issue was talking to the hospital the next day about when she was going to be discharged. She was telling the staff that my father was on his way over to pick her up. I had to tell them that she has dementia and that my 94 year old father is legally blind so would not be coming over to get her. Somewhere between Radio City Music Hall and the Empire State Building, I was notified that she was ready for discharge. Fortunately, the aide was on duty and was able to pick her up.
The weekend ended up working out and I don't think our granddaughter noticed any disruption of her trip. She thoroughly enjoyed herself and didn't seem to notice that her grandmother was often disappearing to take/make phone calls.
I guess I'm going to have to contact my cousin if we plan to go away like that in the future so I know there is a local back-up for emergencies. I really don't know what I would have done if she hadn't been available. My father couldn't remember any of his friends from their old neighborshood and the limo at their residence doesn't run at night. I certainly could not send him home by himself in a cab!
Thursday, January 5, 2012
Friday, November 4, 2011
Effects on Caregivers
A friend who moved in with her parents to care for them until they died told me earlier this week that she is just now starting to read again-something that she just didn't have any interest in or time for when she was caring for her parents. She was always listening to the baby monitor next to the bed to make sure they were okay. She went on to say, "there is nothing harder than being a caregiver for your parents."
The reading comment struck me because her parents died in 2003 within a few months of one another. She has been recovering emotionally from that experience for seven years and just now is beginning to turn her attention to some of the things she liked to do. That's not to say she's been idle all that time-she ran a business and worked full-time.
What her comment brought home to me is how hard this type of caregiving is. Mothers provide care and use a lot of energy when their children are growing up but it's a hopeful type of caregiving. It's not always fun and games but we look at our children and hope they grow into healthy, happy adults. When you care for your parents, as someone else recently said to me, you know what the ultimate end is going to be.
It's easy to say that caregivers have to take care of themselves but it's very difficult to achieve. In the back of my mind, I always have a mental clock telling me that it's time to fill the pillboxes or make the next doctor's appointment. There is the worry about falls and other health issues because I do know what the ultimate end is.
Everytime there is a crisis, I wonder how much intervention is too much. At what point do we step back? What is ordinary care and what is extraordinary?
I try very hard to turn that mental clock off and take time with my husband. Time alone is also important-even if it's just a short walk. How do others take care of themselves?
The reading comment struck me because her parents died in 2003 within a few months of one another. She has been recovering emotionally from that experience for seven years and just now is beginning to turn her attention to some of the things she liked to do. That's not to say she's been idle all that time-she ran a business and worked full-time.
What her comment brought home to me is how hard this type of caregiving is. Mothers provide care and use a lot of energy when their children are growing up but it's a hopeful type of caregiving. It's not always fun and games but we look at our children and hope they grow into healthy, happy adults. When you care for your parents, as someone else recently said to me, you know what the ultimate end is going to be.
It's easy to say that caregivers have to take care of themselves but it's very difficult to achieve. In the back of my mind, I always have a mental clock telling me that it's time to fill the pillboxes or make the next doctor's appointment. There is the worry about falls and other health issues because I do know what the ultimate end is.
Everytime there is a crisis, I wonder how much intervention is too much. At what point do we step back? What is ordinary care and what is extraordinary?
I try very hard to turn that mental clock off and take time with my husband. Time alone is also important-even if it's just a short walk. How do others take care of themselves?
Friday, October 21, 2011
What to look for in nursing homes
We have had two experiences with nursing homes-different companies, different states-but neither of them was positive. Before we placed Frank's uncle in a nursing home for rehab after a bad fall, I was given two very important pieces of advice by a co-worker:
1. drop in at odd times to check on your relative-the staff never knows when you might be in so they will be more attentive
2. be nice to the staff-gifts at Christmas. etc.
We did these things and still did not receive good quality care. One time we dropped in after 11 a.m. on a Sunday, when many residents have visitors, to find that his uncle had not had breakfast, not been bathed and had not been checked by the staff. I immediately went to the nurse's station to inquire about what was going on and someone came to the room right away. I also called the facility's director the next day to inform her of the problem. She apologized and said they had been having some staffing problems. Nothing improved but we continued to have someone stop by at odd times during the day to check on him.
Last summer, I had a similar experience when my father was taken to a rehab facility. He kept trying to tell the staff that he wasn't able to swallow and that the food was stuck in his esophagus-he has a problem with food emptying so he knew what he was talking about. He called me and said he needed to go to the hospital. I called the head nurse to find out what was going on and then rushed over to see him. I could see that he was in obvious distress.
When I went to speak to the nurse, she said she had spent 2 hours with him and that he was fine. I determined that the facility's staff doctor would be in that night and I said I wanted him to be seen. The doctor said he needed to go to the hospital. Needless to say, we cleaned out his room that night and said he would not be returning.
When he left the hospital, he had sores because he wasn't properly watched and, while he did get good physical therapy, he did not progress nearly as quickly as he did when we got him home.
I know that many people have good experiences with these facilities and we actually may be facing the possibility of finding a facility for my mother because she needs more intensive care but I'm not convinced that she will get that care from a staff that has to care for many patients. There are certainly questions that I think people need to ask:
1. What is the patient/nurse/aide ratio?
2. How often are patients checked by the staff?
3. Who are your doctors? Some facilities have their own doctors; others allow the patient's doctor to provide the care
4. What kind of communication is there with the family?
5. Do they accept insurance? This care is not cheap-but neither is home care. Round the clock care for my father cost $15,000/month. Medicare only covers a tiny portion of that cost but will cover the total cost in some facilities. For obvious reasons, those facilities do not have many beds available.
6. Check websites that various groups run that show evaluations of facilities as well as family comments-getting figures about health violations is important when making this decision.
7. Walk around the facility and take a good look at the patients. Brochures often show happy people playing cards, singing, etc. The reality might be very different.
I would love to hear suggestions from others who have gone through this. I spent several hours this afternoon checking out facilities for my mother and haven't found anything that looks better than what she already has but know that we are going to have to make some tough decisions because of cost considerations.
1. drop in at odd times to check on your relative-the staff never knows when you might be in so they will be more attentive
2. be nice to the staff-gifts at Christmas. etc.
We did these things and still did not receive good quality care. One time we dropped in after 11 a.m. on a Sunday, when many residents have visitors, to find that his uncle had not had breakfast, not been bathed and had not been checked by the staff. I immediately went to the nurse's station to inquire about what was going on and someone came to the room right away. I also called the facility's director the next day to inform her of the problem. She apologized and said they had been having some staffing problems. Nothing improved but we continued to have someone stop by at odd times during the day to check on him.
Last summer, I had a similar experience when my father was taken to a rehab facility. He kept trying to tell the staff that he wasn't able to swallow and that the food was stuck in his esophagus-he has a problem with food emptying so he knew what he was talking about. He called me and said he needed to go to the hospital. I called the head nurse to find out what was going on and then rushed over to see him. I could see that he was in obvious distress.
When I went to speak to the nurse, she said she had spent 2 hours with him and that he was fine. I determined that the facility's staff doctor would be in that night and I said I wanted him to be seen. The doctor said he needed to go to the hospital. Needless to say, we cleaned out his room that night and said he would not be returning.
When he left the hospital, he had sores because he wasn't properly watched and, while he did get good physical therapy, he did not progress nearly as quickly as he did when we got him home.
I know that many people have good experiences with these facilities and we actually may be facing the possibility of finding a facility for my mother because she needs more intensive care but I'm not convinced that she will get that care from a staff that has to care for many patients. There are certainly questions that I think people need to ask:
1. What is the patient/nurse/aide ratio?
2. How often are patients checked by the staff?
3. Who are your doctors? Some facilities have their own doctors; others allow the patient's doctor to provide the care
4. What kind of communication is there with the family?
5. Do they accept insurance? This care is not cheap-but neither is home care. Round the clock care for my father cost $15,000/month. Medicare only covers a tiny portion of that cost but will cover the total cost in some facilities. For obvious reasons, those facilities do not have many beds available.
6. Check websites that various groups run that show evaluations of facilities as well as family comments-getting figures about health violations is important when making this decision.
7. Walk around the facility and take a good look at the patients. Brochures often show happy people playing cards, singing, etc. The reality might be very different.
I would love to hear suggestions from others who have gone through this. I spent several hours this afternoon checking out facilities for my mother and haven't found anything that looks better than what she already has but know that we are going to have to make some tough decisions because of cost considerations.
Monday, October 17, 2011
What is the best way to handle rehab?
My mother has been in the hospital for the past week. It started with 2 falls which caused me to say she needed to be taken to the ER. The hospital decided to keep her for observation and found pneumonia and began treating that. While treating her for dehydration, she began to retain fluid which caused her to have great difficulty breathing. She was wearing an oxygen mask when I brought my father in to see her.
Now, she is finally ready for discharge but the hospital REALLY, REALLY wants her to go to a sub-acute rehab facility. The problem with that for me is that I saw firsthand how poor the care is in them last year with my father and I would prefer that she go back to the apartment and get the needed care there.
I think she will do much better there because:
-my father will be there and that will help her emotionally
-the aide can watch her more closely than people in an institution can
-PT and OT can come to the apartment and give her concentrated care
After I started to make the arrangements with the home health group we currently work with, a representative from my parents' insurance company called to say she could provide short-term rehab care at no cost to the family. How did she know about the situation? The hospital contacted her about our intentions.
I explained my reservations and asked her for other suggestions for facilities in the area. She named one that was relatively close-by that had an agreement with the insurance company. The problem was that when I tried to research the company, I couldn't find a facility website and the websites that evaluated facilities in the area didn't have good things to say about it.
We currently have an aide coming in for 5 hours a day during the week and 3 on the weekends. My plan is to increase the hours during the week to 10-not sure about the weekends yet. Because the home health service will now be caring for both of my parents, the next increase will be $8/hr-but, of course, we would also be doubling the daily hours. I think it's worth it in the short-term if it helps her get better faster.
In addition, since the aide will be caring for both, she will be able to take them to doctor's appointments. She has been doing this for me already but I always have to be careful about the appointment times because her hours are so limited.
Now, she is finally ready for discharge but the hospital REALLY, REALLY wants her to go to a sub-acute rehab facility. The problem with that for me is that I saw firsthand how poor the care is in them last year with my father and I would prefer that she go back to the apartment and get the needed care there.
I think she will do much better there because:
-my father will be there and that will help her emotionally
-the aide can watch her more closely than people in an institution can
-PT and OT can come to the apartment and give her concentrated care
After I started to make the arrangements with the home health group we currently work with, a representative from my parents' insurance company called to say she could provide short-term rehab care at no cost to the family. How did she know about the situation? The hospital contacted her about our intentions.
I explained my reservations and asked her for other suggestions for facilities in the area. She named one that was relatively close-by that had an agreement with the insurance company. The problem was that when I tried to research the company, I couldn't find a facility website and the websites that evaluated facilities in the area didn't have good things to say about it.
We currently have an aide coming in for 5 hours a day during the week and 3 on the weekends. My plan is to increase the hours during the week to 10-not sure about the weekends yet. Because the home health service will now be caring for both of my parents, the next increase will be $8/hr-but, of course, we would also be doubling the daily hours. I think it's worth it in the short-term if it helps her get better faster.
In addition, since the aide will be caring for both, she will be able to take them to doctor's appointments. She has been doing this for me already but I always have to be careful about the appointment times because her hours are so limited.
Monday, October 3, 2011
What happens when you are unavailable to help?
Since I last added to this blog, there have been a number of instances when assistance was needed but I was unavailable. The latest incidence was last week when I had surgery. Because I knew that I would be unable to help for about a week, I made sure that all of the medications were in the pill boxes, refills were ordered and everything was lined up with the aide.
Best laid plans always go astray and the day after my surgery, my father called not feeling well. His allergies were acting up and he needed to go to the doctor. The aide, God bless her, offered to make an appointment at the doctor's for him and arranged transportation. After thanking her profusely, I explained to her that I would be unable to come to see them for about a week and that I didn't want them to know that I had had surgery. She understood.
After my father's doctor's appointment, a new prescription had to be dispensed, which the aide can't do. I contacted the nurse in the Wellness Center where they live and made arrangements for her to put the new prescription in my father's pill box. One thing that I've learned is that it is necessary to have a really good working relationship with the health care providers and any additional people who come in contact with my parents. If we had not been in constant contact over the past year, these kinds of incidents could have been much more difficult to handle long-distance.
Some things that I've learned:
1. always keep my cellphone fully charged for times when I'm not at home,
2. have the aide's phone number as well as important numbers from the residence, transportation and health service on my cell phone so that I can quickly reach them,
3. keep my binder of medical information on my parents updated as well as the notes I made during doctor's visits
In addition, since I'm learning more about their history as we go along, I keep a running updated medical history for myself so that I have access to it for emergency situations.
Best laid plans always go astray and the day after my surgery, my father called not feeling well. His allergies were acting up and he needed to go to the doctor. The aide, God bless her, offered to make an appointment at the doctor's for him and arranged transportation. After thanking her profusely, I explained to her that I would be unable to come to see them for about a week and that I didn't want them to know that I had had surgery. She understood.
After my father's doctor's appointment, a new prescription had to be dispensed, which the aide can't do. I contacted the nurse in the Wellness Center where they live and made arrangements for her to put the new prescription in my father's pill box. One thing that I've learned is that it is necessary to have a really good working relationship with the health care providers and any additional people who come in contact with my parents. If we had not been in constant contact over the past year, these kinds of incidents could have been much more difficult to handle long-distance.
Some things that I've learned:
1. always keep my cellphone fully charged for times when I'm not at home,
2. have the aide's phone number as well as important numbers from the residence, transportation and health service on my cell phone so that I can quickly reach them,
3. keep my binder of medical information on my parents updated as well as the notes I made during doctor's visits
In addition, since I'm learning more about their history as we go along, I keep a running updated medical history for myself so that I have access to it for emergency situations.
Thursday, August 18, 2011
Long-Distance Emergencies
When I started this blog, I was away from home (too far to get back to handle the situation) and my elderly mother had to be hospitalized. I was not only concerned about what was happening with her, but also how to get my father home from the hospital. He is in his 90s, is legally blind and uses a walker to get around. Having him take a cab home was simply not an option and I couldn't reach any relatives. Fortunately, we were already signed up for an in-home aide service and I was able to call them and arrange for an aide to drive him home.
The same scenario didn't work the next day with my mother because she is not listed as a patient with the service. Once again, I was one the phone calling relatives trying to arrange transporation for her. After several hours, I told the hospital that I hadn't had any luck reaching anyone. I asked to speak to a case worker but the case workers were already gone for the day.
My mother didn't understand why she couldn't simply get in a cab and go home. Since she has dementia, that was not an option. I finally got a call from a relative who could take her home.
We are currently working to get a case opened with the in-home agency so that these types of emergencies can be better coordinated in the future.
How do other people handle these situations? The hospital kept asking if there weren't relatives or friends in the area who could help. The reality is that I exhausted those options. My only other option was to arrange non-emergency transport back to their apartment.
The same scenario didn't work the next day with my mother because she is not listed as a patient with the service. Once again, I was one the phone calling relatives trying to arrange transporation for her. After several hours, I told the hospital that I hadn't had any luck reaching anyone. I asked to speak to a case worker but the case workers were already gone for the day.
My mother didn't understand why she couldn't simply get in a cab and go home. Since she has dementia, that was not an option. I finally got a call from a relative who could take her home.
We are currently working to get a case opened with the in-home agency so that these types of emergencies can be better coordinated in the future.
How do other people handle these situations? The hospital kept asking if there weren't relatives or friends in the area who could help. The reality is that I exhausted those options. My only other option was to arrange non-emergency transport back to their apartment.
Friday, August 12, 2011
Beginning concerns
As my parents have gotten older, more issues have come up about their care. At the same time, most of my friends are dealing with the same issues and we've all said, "There's no book about how to do this!" My hope with this blog is that people will share how they've handled different situations so that others can learn from their experiences.
Some of the issues that I would like to discuss and get feedback about include:
How do you handle the logistics of doctor's appointments when you can't do this yourself?
What do you do with all of the things that are in your parents' house when it is cleaned out?
What do you keep/what do you throw out?
What do you do with photos?
How do you handle issues from a long distance?
This last is a pressing concern for me right now. I am out of town and my mother ended up in the hospital tonight. To complicate matters, my 90+year old father went with her to the hospital in a cab. He has significant health issues and she has dementia. The doctors decided to keep my mother in the hospital overnight and I had to make arrangements long distance to get my father home. Fortunately, they are already being cared for by a home care service so we were able to arrange to have one of the aides take him home. I'm not sure what I would have done if I had not already had those arrangements in place.
How do others handle emergency situations when they are away?
Some of the issues that I would like to discuss and get feedback about include:
How do you handle the logistics of doctor's appointments when you can't do this yourself?
What do you do with all of the things that are in your parents' house when it is cleaned out?
What do you keep/what do you throw out?
What do you do with photos?
How do you handle issues from a long distance?
This last is a pressing concern for me right now. I am out of town and my mother ended up in the hospital tonight. To complicate matters, my 90+year old father went with her to the hospital in a cab. He has significant health issues and she has dementia. The doctors decided to keep my mother in the hospital overnight and I had to make arrangements long distance to get my father home. Fortunately, they are already being cared for by a home care service so we were able to arrange to have one of the aides take him home. I'm not sure what I would have done if I had not already had those arrangements in place.
How do others handle emergency situations when they are away?
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