When our mother was diagnosed with early stage dementia, my brother and I began looking into what options were available to us as a family. My brother and I lived far enough away that caring for mom was not something that either one of us could do without a major life disruption. However, we wanted to give my mother the care that she needed in the least restrictive way possible. She had always been a very social person and had long term friendships that we wanted her to continue as long as possible.
We first considered finding an assisted living facility or nursing home where we thought she would be safe and where we thought her every need would be met. We arranged visits to several facilities but mom, who was adamant about not needing care, was even more adamant about staying in her home. She was so clear about wanting to stay at home that my brother and I began investigating home care.
What we found surprised us. After visiting the dementia units of nursing homes we frequently saw seniors sitting in wheel chairs either sleeping or looking very bored and having very little real social interaction. Finally, we decided that home care is the only form of care that provides one-on-one care, leading to the formation of a relationship between the senior and the caregiver that would be very difficult to achieve in a setting where the caregivers are attending to multiple patients and change with every shift.
Once we decided to try home care we thought our troubles were over. In fact, they were just beginning.
When the first caregiver arrived on Monday morning, mom invited her in, made coffee and put out some cake. Of course, mom had long forgotten the deal we had made with her: that in exchange for remaining in her home, she would accept help at home. She thought the aide was someone who had just stopped by for a visit. After the aide had been with her for a few hours mom stood up and told her that she did not appreciate being put in the position of having to ask the aide to leave. She let her know that people who are well brought up do not overstay their welcome and know when it is time to leave. The aide, surprised, informed mom that she was not leaving and that she was there to take care of her.
That was not what mom wanted to hear. She asked the aide her age. After the aide replied mom informed the aide that she was 86, not in need of care and probably better capable of caring for the aide, than the other way around. This scene was repeated four or five times over the next month as the agency kept sending aides who would leave after being followed around relentlessly day and night being asked when they were going to leave her in peace.
Eventually, a very capable aide with very good social skills and a very sunny disposition was able to gain her trust and acceptance. They eventually formed a bond that lasted for the six remaining years of mom’s life. The aide whose name was Sonia and hailed from Central America was in the room with mom when she passed away.
There is no magic trick or easy answer to how to get a loved one who needs care to accept it. After some difficulty we were able to create a situation for mom that met her needs and gave her most of what she wanted, which was to remain in her home.
That decision, which was made to please mom, actually lowered the cost of care. Since the house was paid for, we only had to pay for care, and not the overhead that comes with an institution. The money that my parents had saved plus the money that my brothers and I contributed each month allowed her to be cared for in the way that she wanted, at the lowest cost.
Looking back on the whole experience I would advise anyone facing trying to convince a parent to accept care to think about the following. Think of this as a family affair. Everyone has to be brought into the conversation. It is likely that there will be some difference in the level and type of care that each sibling or family member thinks is warranted. These differences should be worked out ahead of time and the earlier these conversations are had the better. If there are large differences between family members that cannot be bridged after several tries it may be a good idea to bring in a professional to broker compromises to be able to move forward. If you find yourself in that position please give me a call. I would be happy to recommend professionals who work with these issues on a regular basis.
One of the first orders of business is to have at least one, preferably two family members who have power of attorney. It is very important that this be done while the person receiving the care is mentally competent to give someone durable power of attorney for financial matters as well as health care. State laws differ so it is important to consult a lawyer. Ideally, each family member should contribute money or services at a level that is comfortable for them, provides significant help and still allow each person to manage their own lives and family obligations. Dividing up the work in a fair manner is important so that those who want to contribute money and those who can contribute time (dealing with finances, groceries, doctor visits) can all help.
It is a long term commitment and everyone has to be reasonably comfortable contributing something meaningful but also being realistic given other responsibilities. It is also very important to have continuing conversations with the parent and presenting care and other issues that the parent may resist, as being under the control of the parent. The effort to convince a parent to accept care can be difficult and time consuming but if the parent does not feel that they have some control, it will be much more difficult to gain their acceptance. It is also a good idea to keep in mind that a person who is largely in control of their faculties cannot be forced to do anything that they do not want to do. It may be better to back off for a while and try again later. Incremental steps may yield a better result in the long run, which is why beginning the conversation early is so important. You do not want to be trying to get someone to accept care, who does not want It, in the middle of a crisis.
Give us a call if you would like to discuss any issues related to senior care. We are not professional counselors, but we have had a great deal of experience and many problems that may be new to you are issues that we and the families that we serve have dealt with before. You are under no obligation to use our services. This is what we do and if we cannot help you we are happy to point you in the right direction and assist in any way we can.