Editor’s Note: This is the last post in a 3-part series about what happened when a working caregiver’s mother had to go into the hospital. This post is about what happened after the emergency room visit  and the hospital stay .
After six days in the hospital my mother was able to come home although she still was having a lot of problems with blood sugar being too high and then too low within a short period of time. The doctor asked if she would like home health to monitor her blood sugar levels. My mother agreed but I asked if we could choose our own home health provider. I knew someone who had used a service that they liked.
I don’t know what we would have done without some help at home. The second day that she was at home the home health staff came for an assessment. They recommended that an LVN come out four days a week to monitor blood sugar, someone to help her with her bathing three times a week, and to be evaluated for physical therapy.
My mother was able to take walk and care of her somewhat but was very weak and limited. She called her housekeeper who came over four days in the beginning and then eventually three days a week to help out. I went on Saturday and Sunday and some evenings. Mother ate a steady diet of chicken vegetable soup and cornbread that the housekeeper made for weeks but it was the only thing that she wanted.
The home health agency also arranged for a physician service and the doctor comes to her house. This has made everything so much easier for her and for me. She does not have to get dressed and spend hours away from home. I don’t have to take off work to take her to the doctor which usually means that I miss at least a half day of work. Sometimes the visiting doctor did not come when they say they would be there but at least we were not waiting in a doctor office somewhere.
The LVN fills a medication divider every week and fills enough insulin syringes until her next visit. I am not sure that is really such a great idea because Mother is now used to that whereas she used to handle her own medications. What happens if the service ends?
Mother immediately liked the visiting doctor. This doctor recommended that my mother start insulin injections instead of the oral medications she had been using and her blood sugar levels improved. Because diabetes is a chronic illness and she continues to experience wide differences in her blood sugar level home health will continue indefinitely.
The housekeeper and I shared shopping and laundry duties with the housekeeper doing most of the cleaning and I cleaned the kitchen, did dishes and changed and washed sheets on the weekends. And I spent time with her: listening to her, talking about what else was going on in the world and just being there.
I knew that she felt better when I got to her house one Saturday and she was dressed and had on make-up as if she was going out to eat. She still did not actually want to get anywhere but she said that she felt so much better dressing like life was back to normal. She also began doing some light cooking but still only wanted soup and cornbread. We now had a “new normal” routine.
Because of her diabetes she continues on home health care indefinitely. The visiting physician has taken over all of her primary care, including managing her diabetes and chronic pain. My job became that of a manager: prompting her about bills being paid, cancelling doctor and other appointments she had set up before she got sick, following up when the doctor did not come on the day we expected her, and calling the home health agency when the bath aide came late or not at all.
The frustrations were that she would need me or want to talk while I was at work. Although I have a flexible job I had meetings and other things going on that I could not just drop when she called. She often did not understand that, especially if she was having a bad day or in pain.
For a while I was exhausted. I gained weight. I got angry at her at times and then felt guilty. I have tried to give myself permission that it is okay to feel what I feel and that I cannot do it all. I am very grateful we had help and that she is better. I am starting to feel like I have a more normal life now but I know that she will always have some health problems and will need me. I also know that home health may not last forever and when it ends we have to make other decisions. If help is not medically necessary then we have to look at paying for someone to come in and help.
Since this happened, I am more confident because I have learned a lot about agencies to call that can really help. I want my mother to stay home and be independent as long as she can. I have learned to take one step at a time during this few months. There is so much in this situation that no one can control. I have learned some better ways to manage things. You have to stay flexible, be open to help, and remember to just be there with them so they are not alone and afraid.
Below is what I have learned about caring for someone at home with a chronic illness:
- Ask the doctor if home health care is possible or what help that might be available once the family member goes home. Ask for an evaluation of the older person’s ability to take care of themselves.
- Ask to talk to a hospital social worker about what services might be available at home, whether it is medically necessary or will just help you and the older person. In choosing a home health or non medical agency, try to contact at least three different providers, compare their services, and choose one that seems best for you.
- If the doctor writes orders for “skilled care” Medicare should pay for. Realize that it is usually temporary unless certain medical conditions exist.
- Make sure that your family member has signed a HIPAA form so that the health care people can talk to you about care.
- Make sure everyone who comes in to help has your name and telephone number. Tell them that if they cannot reach your family member to call you.
- Is the emergency contact information posted at home so anyone can reach you or another family member?
- Ask for help, including family members of other generations. Don’t accept that “they are busy and have their own lives.” We all find time to do what we want to do. Ask people to help you with one or two things that will help lighten your load. The older family member also benefits from having other family around.
- Accept help from anyone who offers if you trust them. Maybe a friend or neighbor might offer food or to come and visit.
- If cooking is a problem, call Meals on Wheels. Not only does the person get a nutritious meal but they have someone else checking on them.
- Call the area agency on aging at 2-1-1. They may have services that will help and it is not based on income. They also have help for you including classes and support groups.
- You cannot do it all. Recognize your other responsibilities and set priorities. My office got junkie and the house was not as picked up. Although it bothered me but I was too tired and it was not as important.
- Get as much rest as you can.
- If possible, tell neighbors that your family member is still ill and needing help. They may offer to look in on him or her or at least call to check on them.
- Keep notes and don’t be afraid to call providers and tell them when home health personnel are late or not showing up.
- Take the initiative to communicate with everyone involved in the care. Don’t wait for them to call the older adult or you.
The Medicare website offers help finding home health care  and also the quality of the care. Also talk to physicians, friends and others who have used home health care. You can also check with the status of a home health agency with the Better Business Bureau.
If home health is not possible because the person does not need “skilled care” at home, you can find help from a non-medical personal service or companion care company. Expect to pay $17-$25 per hour with a 4 hour block of time being a minimum if you are working with a company. If you choose an individual ask if they are bonded, have insurance, and for references. Often referrals from doctors, friends, and family are helpful.
Edited by Zanda Hilger
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