Dealing With Family

Clearly one of the hardest areas to contend with when dealing with a loved one’s dementia is that of dealing with family and significant others.

My situation with my mom was complicated by the fact that she was living with her companion of over 10 years, first in Florida and then in Arizona, while her three daughters lived in the Northeast. I think all of us were pretty much in denial when my mother first showed signs of dementia. Her companion did have her tested with an indication of mild dementia but choose not to tell us at the time. This obviously created some problems for the family.

The family dynamic is such a complicated one where each person has their own set of beliefs about what is in the best interests of the person with dementia. No two people are coming from the same place.

My mother and I always had a very special bond. My dad once said to me that he always knew he could count on me to take care of her and I truly took this to heart. Yet, while I saw mostly eye to eye with my sisters, there were a few times that her companion and I diverged.

When her companion came into the picture, I generally kept out of things. Yes, I would be a sounding board and give legal advice, but I tried to respect that she was a grown woman who had always handled her own finances and health. 

I thought it odd that they had made a trip to go buy a house in Arizona, before she sold the one, she owned. After questioning her, I honestly thought it was impulsive, but not that there was anything where I should question her ability to make decisions. Had I known there had been an earlier diagnosis, I may have thought differently.

Once she moved to Arizona, she had a drastic decline. I think it was a very difficult situation for her companion, where he thought he could handle things and probably was in denial. I do believe that both her companion and I tried our best to be open with communication at that point, but I do think there were things we were afraid to say to each other.

He came to me suggesting we get an aide for my mother. I originally suggested twice a week but made a comment that I understood that to be the best caretaker he needed a break too. When asked later why he only had the aide ever come once a week, he told me he had felt at the time that I felt it was for his convenience. That was not what I really meant, so this was a miscommunication.

Yet at the same time he would do things that really bothered me. He would leave my mom unattended to walk a large dog that he had newly gotten or for a quick stop at the grocery store. My mom at that point should never have been left alone. There were other things such as giving her certain medications, taking her on trips abroad and others. I learned that it is crucial that a person’s loved ones talk everything out, reach compromises and get on the same page.

Try to understand where everyone is coming from.

In our situation you had the case where my father had died and my mom, 10 years later was with a new man. This is always a difficult situation. In many ways we welcomed that she had a new love in her life, but in other ways it was tough for us. My mom had always taken trips with her daughters and her grandchildren, now she took trips with her companion and his grandchildren. In many cases she would no longer make decisions without consulting him, something that we were not used to. They did things which were very unlike her. My mom was no longer just ours but had a whole other life.

After they moved to Arizona and her drastic decline began, the difficulty was that he was unwilling to give her up, while the family wanted her back east where we could more readily be with her. Travel to Tucson Arizona, at that time was not simple and generally included a 13-hour average ordeal. He wanted to have her placed in an assisted living facility in Arizona. We wanted to have her in a facility in New Jersey and to have him move back east, which he was unwilling to do. Since my mom had given me her power of attorney, had appointed me as Trustee of her trust, and made me her healthcare proxy, the ultimate decision on what happened to my mom was left to me. 

Other families will have they own set of divergent views and interests. I think the best thing that everyone can do is to try to take themselves out of the equation and truly think what is in the person with dementia’s best interest. In our case, all the immediate family, including grandchildren, except for my one sister who lived in Virginia, lived within about an hour of where we ultimately chose to have her placed and it seemed to be in her best interests.

Keep Lines of Communication Open.

Probably the reason there was little disagreement amongst my sisters, and I was because I spoke to my one sister every day, a least once, about everything that happened and that I was handling and needed to decide. My other sister and I always spoke whenever there were any new developments or decisions, probably at least once a week. As my mom’s condition worsened phone calls with her companion became much more often and when it became apparent that big decisions needed to be made, phone calls were daily.  Ultimately, we very cooperatively sold their home, packed up her things and had my mom moved back east.

What to do if there is disagreement amongst the family.

The question may arise as to who prevails when there is disagreement that cannot be resolved. In some situations, the law may decide whose view ultimately prevails. For example, if a healthcare proxy was entered by your loved one naming a specific person to make healthcare decisions, then that person’s opinion will prevail, legally. As to financial matters, a guardian of their estate or trustee, also may legally be entitled to make decisions. 

Could you go to court if you are a family member who disagrees with decisions that are being made? In certain situations, yes. A court may act if it is shown that a person whose duty it is to take care of an elderly or incapacitated person is not acting in that person’s best interest. Realize that courts will generally only intervene in matters that they believe are truly important. If a loved one’s finances are being mishandled, this would be deemed important enough. Firing a home health aide, probably would not be.

Should counseling be considered? Perhaps it should in certain situations.

Keep in mind that sometimes, one family member may have a divergent view simply because they are not educated on the specific topic that has come up. As crazy as I went constantly researching everything from diagnoses, to medications, to facilities and everything else, I shared all this information readily with my sisters so that I could get their opinions on things as well as see that I was making informed decisions regarding matters.

End of Life decisions.

Probably no area will be more difficult for families to deal with more than end of life decisions. Alzheimer’s and dementia are progressive diseases and as such these decisions are inevitable. The earlier the family discusses the matter, the better. It is, of course, preferable to try to get your loved one’s opinion on this subject before they can no longer give you, their preference.

Again, legal documents such as a power of attorney for healthcare or a living will might control this decision. In New Jersey, and other states there is a document called a POLST – New Jersey Practitioner Orders for Life Sustaining Treatment – which tells all healthcare providers what a person wants during emergencies and has more options than a simple DNR (Do not resuscitate) order. See https://www.state.nj.us/health/advancedirective/polst/

One of your loved one’s medical providers may ask you to fill one out for them. Keep in mind that this document can be changed by one with legal authority to do so.

The key here is to take into consideration everyone’s views on what to do and be considerate of each other’s beliefs. You simply must consider what is best for your loved.

Funeral and Burial Decisions.

Here, my best advice to families is to take everyone’s desires into consideration, to make sure that everyone who wants a role, has one and to realize where you can give.