Community question: My grandmother has dementia and her short term memory is almost gone. We are trying to get meals on wheels in to get her a warm cooked balanced meal. She is very stubborn and lives on her own. There is a concern from family members that the social worker the meals on wheels program sends to do the intake interview will force my grandmother to move out of her house before she decides to on her own. Is this something to be worried about? If we’re asking for help for her, does that invite them to dictate what care she needs?

 

Answer by Prudence Lowe Benjamin

The meals on wheels drivers are volunteers. They will bring the food to the door, or put it in the fridge. They may look around quick if they are asked to put the meal in the fridge, and they would report a situation of neglect and abuse, but they exist solely to help people stay in their home and do not have an agenda to force people into care outside of their home.

It has been my experience that it is pretty tough to get a person placed in a nursing home unless they have more than what they call custodial needs. Custodial care is when people do not have major medical needs for skilled nursing care and mostly need good health care maintenance.

There are a LOT of services available today to help your Mom stay in her own home these days if she is able to. My Dad was able to not go to a nursing home after some pretty major setbacks in health throughout his whole life unless it was necessary for him to go into one for rehabilitation after surgeries He was able to have home health care nurses and workers come into his home. My Step mom always had a diagnosis of Schizophrenia and from time to time she would be hospitalized. She had severe rheumatoid arthritis but had no pain because she was on powerful medications, but those powerful medications also have psychiatric effects. So what kept her degenerative arthritis in check aggravated her schizophrenia. She was a wonderful woman who raised two wonderful children, and was very involved with my Father’s seven children and many grandchildren, her family and friends, and my Dad’s fishing friends. When my Father got older and his health went downhill she took care of him. She was even good to my Mother. She cleaned house for a living and her house was always clean. She would go over to her son’s and do his laundry when she visited him every Saturday, because she loved doing things for him, and she went and did my brother’s laundry when he was sick. She was always a giving person. She had cared for her first husband when he died of cancer, and before that had to leave school early to care for her family and her own Father when he died of cancer. So she had never finished school as a young person. She had always cared for family and worked.

My Dad and she were a good pair because they accepted one another’s weaknesses, and they did everything together as they grew older. She had a hard time after my Dad died. For two years my step mom still was and she began to need more psychiatric hospitalizations. She would get very confused at night and would call the police in a panic because she believed that someone was trying to break into her house to kill her, and she really believed that people were living in the attic. Everyone thought she must not be taking her psychiatric medications. My Father and she had always had all their medications on the kitchen table in pill minders they always took them along with a few vitamins. She usually cooked low fat meals, and ate a lot of salads. The drank a lot of bottled water.

Now she was becoming confused and unstable on a daily basis, and when she got psychotic enough to go to the emergency ward, she would only get admitted to the psychiatric unit for a day or two. Then the family worked out a plan for her to go to a day program at the senior center three days a week, where she had a good time, got evaluated by a nurse, got exercise, and socialized. The other two days a week she had a home health aide come in. One day on the weekend she went with her son to his house to visit with he and his wife, and Sunday was left for other people to visit or take her out or she rested. That worked for a while but night continued to be a problem with the confusion and the wandering……So after the last breakdown time this happened, she was lucky enough to wind up transferred to a geriatric acute psychiatric hospital unit in Gardner, Mass, after her short term stay in a psychiatric hospital near her home. The Geriatric psychiatric units only care for the elderly who have psychiatric problems so they get better care there. It is in an excellent psychiatric hospital. Finally as well as getting adequate treatment, the legal aspects of her care were addressed.

Her son applied for and got guardianship and power of attorney. He was able to get her into a local assisted living center where there is a section that cares for the memory impaired. It is a locked unit so that she can not wander at night. She is not happy there yet, and hopes to come home. It costs 4,000 dollars a month for her care. They made my stepbrother sign an eighteen month contract to get her in there. Her income will pay part. The family has to come up with the rest. The plan is to rent out her house to help pay for the rest of the monthly fee if she stays. This is because if they sell the house it will not help as much in the long run. I guess the money part is tricky. There is a program paid for by Medicaid (Masshealth here in Massachusetts) that helps the person themselves hire help in their home. The doctor signs a paper saying that he thinks they need care, and then they are evaluated for the care. This program helps a lot of people stay at home if they need help with ADL’s (activities of daily living). It is certainly worth researching.

I think the lesson for us all is that we should all buy long term care insurance that pays for home health care too, and we should all do it at a young age because it really would pay off in our elder years. The other thing that can be done is if family has a family meeting and everyone decides what they can do to help your Mom. Home care requires a lot of managing and it is hard to have someone come into your home, but some elders might absolutely love it. My sister did a lot of home care and had some really lovely times helping people stay in their homes. I cared for one couple who had been in their same home since they married seventy years before! How precious that was. The bottom line is that if a person is more mentally stable and comfortable at home, they will be less confused in familiar surroundings with familiar people around them. But we do the best we can and feel good about it, because the elder’s needs come mixed into a lot of other family needs as well. I think that we just have to try to make sure they get the care that we would like to have in their situation, as much as possible.

My Mother got used to caregivers in the nursing home she went to and the caregivers loved her, but I saw a very confused woman suffer a lot in the bed next to her. I thought that her anxiety level was not addressed. Anxiety causes people to suffer. For some reason, evenings and nights can be especially terrifying for some elderly people…and although I understand that much care should be given to them not being overmedicated, I also think that they have a right to be able to rest and relax when they suffer from extreme anxiety as a result of the confused state of their mind. No one deserves to suffer. Part of being in a huge nursing home is that unless your family visits all the time, you can not get the emotional attention that you need as a person. Too many times the staff, even if they are well staffed, have enough to do giving just basic care and even important things get missed. They may be sweet and always personable and loving and comforting when they are without loved one, but they have precious little time to just sit with the elderly, and that sometimes is what elders need. They just need the comfort of someone being there. Staff may get annoyed at having to work around family visitors, but family should be present as much as possible. The happiest nursing home residents and those that are better taken care of are the residents who have family visiting.

My brother sat with my Mother in her nursing home for hours each week and saved her life three times. He was with her and noticed her crisis when no nursing staff was in the room, and alerted staff, and when staff brushed her off he insisted that she be seen by a doctor, and saved her life. That is good teamwork between staff and family. You can participate in care plan meetings for your loved one to know what is going on with medical issues and voice your care concerns, volunteer in the nursing home your loved one is in, and serve as an ombudsman for nursing home residents to help achieve better care for nursing home residents. Home care and nursing home care both can be excellent care. Sometimes you can even find a doctor that will come to your home, along with all the other home health services, but it all comes down to what insurance will pay for. You can take your loved one out for meals and even overnight for a week or two a year, you can even buy a meal in the nursing homes now and eat with or feed your relative. It is a good time to interact because they are up and more alert, and might even eat better with you there coaxing them to eat or feeding them as long as you know how.

Long story, but we are all very similar when we go through this time in our lives, and we are all looking for answers and sharing them experiences helps. The one thing that made me very angry about my Mother’s care in a nursing home was that my Mother was oxygen dependent and they made her stay in her room by giving her a short oxygen cord. She had been a walker and a swimmer all her life. Now she had COPD and she was oxygen dependent to keep thinking clearly. With a long oxygen hose she would move the wheelchair out the door and down the hall a ways, and the hose would get disconnected from the oxygen concentrator. I thought that she should have an oxygen tank and have a tank to fill that was put on her wheelchair so that she could exit her room to remain mobile. My older sister said that insurance would not pay for the oxygen canisters when she went out…so the oxygen stayed the same, and she became more unable to stand and help with transfers. Eventually they had to use a hoyer lift to move her in and out of bed. When I requested she have physical therapy bed exercises it did help strengthen her again to at least help her stand to transfer for a while. Restlessness can be used to an advantage in keeping people mobile, as long as they are not allowed to go past their limits. IF my Mom had been able to push the wheelchair around the long halls, who knows how much more able she could have stayed for how much longer? My sister took care of a man who hiked a couple of miles up and down a mountain every day and had to keep up with him…because he had alzheimer’s she had to make sure he made it home! Being as fit as we can be for as long as we can be fit is a great idea, not just for body, but for our minds as well.

About Jonah Okun

Jonah served as our Operations Director for two years. He holds a degree in Comparative Digital Communications and Happiness Studies from the University of Massachusetts, Amherst. His intrigue in promoting well-being through new digital platforms pairs perfectly with the organizations goal of making online support for caregivers a reality. Prior to his time at The Caregiver Space, he spent seven years as a professional chef, baker and restaurant manager. He now happily resides in Brooklyn, New York.

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