You and Your Aging Parents
Most children survive their parents and end up caring for a parent. This is a practical article regarding issues arising with aging parents.
One of the hardest things I ever had to do was to step into the role of caregiver for my parents. I was a focused, self-absorbed, mid-level manager with my job being my life when I was gob smacked by my parents aging. The impact of this role caused my life to crash over a relatively short period of time. I went from an in control, secure supervisor to a sad, insecure person who was out of a job. Let me walk you through that transition, and we will discuss ways to prepare so you don’t step into the role of caregiver feeling insecure and caught off guard.
This all started when rather suddenly, my father died. He had been in a rehabilitation/assisted living facility because he had difficulty walking. During those days, I naively left all the decisions to my mom and only got involved in what I thought of as their issues when asked. Dad was fine on Easter Sunday as we brought dinner to his room, and then he was dead of sepsis 48 hours later.
Check the facility yourself before you ever let your parent stay in it. This was an old, dirty, place where the nurses and aids were unfriendly and uninterested on a good day. Perhaps, just perhaps, the outcome could have been different in a cleaner environment where the nurses were interested in the patients. We will never know. The point is get involved, do not leave the decisions at this stressful time to the surviving spouse.
Mom made it through the burial in a daze. She initially went back to their home. Within a very few weeks, it was clear Mom could not live alone, and I moved Mom into my house. I was an only child, and by default, the primary caregiver. I was not prepared for the role as caregiver. My mother and I had a rocky history. I loved her, but I often did not like her.
I made mistakes. After my father died, I thought my mom was fine. I knew she was a bit forgetful, but I assumed she would be ok. Soon I discovered Mom needed help daily. She was struggling with dementia. Instead of understanding, I was short-tempered and upset that she wasn’t coping. I treated her as though she could do it all if she just worked hard enough. I was angry and wanted my Mother back.
An example involves the medical alert I bought her, and she refused to keep. The alert company told her to pack the unit and ship it back. She called me about what to do. I assumed she understood just unplug the unit from the wall and put it in a box. I told her where to take the box to send it.
In fact, she packed and shipped every wire, and everything related to the alert as well as our cable telephone and television service in the same box. She just did not understand. It wasn’t funny calling AT&T for a 2nd installation. I was not very compassionate.
To respect Mom’s independence, I decided to add an addition to my house for her. I hired a contractor, architect, and engineer to plan this second-floor addition. I was going to spare no expense and used the money I had in savings to build my mom and her cats a home.
Unfortunately, she lived a very short time in the apartment, and I now have this apartment that stands unused. It is better, in my opinion, to find your surviving parent a room within your existing house, maintain her current home and 24/7 caregivers, or relocate her to a clean, good-feeling Assisted Living facility.
Along with building the apartment I wanted to give my mom the best time she could have in her later years. Even though I knew she had mild dementia, I could visualize my mom and I traveling to London for a weekend. I dreamed of being able to provide Mom the opportunity to travel and do new things. I was positive if I could focus Mom, she would be able to function and have fun traveling.
Mom was physically in terrific health except she needed a hip replaced. Replacing her hip became the first order of business. Know what you can expect as a result of any surgery. Anesthesia in older adults can cause a reaction. The longer the surgery, the greater risk of a reaction.
If the aging person has dementia, anesthesia can exacerbate the situation. This is not a minor issue. Post-surgery at 2 in the morning I received a call from the nurse saying you don’t have to come up here to the Hospital, but… My mother needed a transfusion. She did not want it. Mom believed they were trying to inject her with ketchup. When I arrived at the hospital, she knew me, but she was angry, mean, and totally out of control. During her remaining months of life, Mom never really got back to the mental capacity she had prior to the surgery.
From that time forward, it was a slow downhill cycle. It’s a painful downhill slide, and it happens often. It’s an Alzheimer/Dementia Decline. There was the night she called the police to have me arrested for some reason I’ll never know. She told me of people stealing things and saw people in the yard with guns. She hallucinated, and we had many tough nights and days. There were days and times I missed work due to issues with Mom. On other days the stress agitated my then undiagnosed microscopic colitis leaving me unable to leave the house. This mysterious illness on top of issues with my mom impacted my job performance. Initially my boss was understanding, but I was demoted. It was the initial step of my professional decline.
The next step downhill is the time you decide you can no longer handle your own parent by yourself. In my case I knew I had to get an in-home caregiver or put my mom in an Assisted Living facility at least when I was traveling. I needed to get back to my job. She was vehemently against an in-home care giver so I found a facility that could provide her a room on a short-term basis.
The time came where I had to travel for work for a week. I couldn’t leave Mom alone, so I arranged for her to stay at the facility. Mom fought against going to this Assisted Living facility (she cursed me like a sailor when I left her there using words, I didn’t know she knew), but in a few days she was thriving there. I made the very difficult decision that, to save my job, I’d have Mom live permanently at the Assisted Living facility.
The facility felt Mom could fit into Assisted Living area where they checked patients every 2 hours and not have to move initially into Memory Care. Mom told me she was happy there. Mom had friends, played dominoes, enjoyed the social life, and even had a boyfriend. This worked well for about 8 months until she stopped answering the phone in her room. I knew then she had forgotten how to answer the phone, and there was a problem. About that time the facility reported she was not getting dressed in the morning and could not find the cafeteria.
On the downward spiral we reach Memory Care. Memory Care is a sad place. Many were on feeding tubes silently surviving in their beds. Only a few in the facility were physically capable of being up and interacting with others. I hate to admit it, but this place was so depressing I had a hard time visiting Mom. Mom had become paranoiac believing that people were coming to kill her. She had night terrors and was difficult for the staff to control.
The next step down in this terrible process was the hospital stay after Mom was living in Memory Care. It was horrific. I was trying to do my job while waiting for surgery on my torn rotator cuff and trying to stay with my mom. It was almost impossible. My boss had become almost surly when dealing with me. He had no sympathy for my difficulties, Mom’s illness, my illness, or my pending rotator cuff surgery that was the result of a fall.
By now dealing with my mom in the hospital was like dealing with a child. She pulled out her IVs. She tried to run away. They put her in a covered cage of sorts, and then they tied her to the bed. It was such a painful time. I had so many feelings, and there was no one to talk to.
After she returned to the facility from the hospital visit, she never ate and rarely drank again. She died shortly thereafter. They said she no longer remembered how to eat. Somehow, I believe she decided life was no longer worth living. This brings another level of difficulty… do you put in a feeding tube? I decided no, because I do not believe my Mother would have wanted to live that way. She was a proud, very bright woman who lost so much of herself.
Ultimately, you reach the death stage. I stayed with her night and day those last 3 days while she was in a coma until she passed. I officially became an orphan. 4 months later I was laid off my job where I’d worked 31 years.
My illnesses and my handling of my mother’s care during her aging and demise ruined my career. Learn the lesson. DO NOT TRY TO DO CAREGIVING ALONE!
I’ve made this list based on what I learned. They are my thoughts to help you prepare for issues with your aging parents. Check information and prepare on the following:
Location and Access to Important Documents. Do your parents have Wills, Living Wills, Burial Arrangements, and/or Powers of Attorney? Where are these? Can you get to copies of them in an emergency? It’s my suggestion the primary caregiver have copies of important documents, so they can immediately respond to issues when the time comes.
Location and Access to Monies. Does the primary caregiver have access to or writing privileges on an account that can be used to pay for expenses related to the funeral or burial? I’d suggest the primary caregiver have access to some funding for this purpose. It is also wise for the primary caregiver to maintain a listing of the location of all monies and properties the parents own. It’s too often that the children must start locating funds after the death of a parent.
Time Off of Work. Upon the death of the first parent it is my suggestion that you plan to take a week or several days off work. Employers may have a certain limited time for bereavement, but I suggest you take additional time off to ensure all necessary burial and financial matters such as notifications to start, stop, or change benefits to the government, banks, or other organizations. It is a very emotional time, but someone must be prepared to assist the surviving spouse in handling all these matters.
Monitoring Surviving Spouse. Monitor how the surviving spouse is adjusting to living without their partner. Depression is rampant in the elderly. My mother was extremely depressed while living with me after my father’s death.
The Issue of Long-Term Care. The reality is if your surviving parent becomes frail mentally or physically, you must consider their long-term care. There are limitations on insurance for in facility care. The next question becomes, do your parents have Long Term Care Insurance? If you are in a situation where you have a parent facing a lengthy illness or incapacity, I’d suggest you consult an Elder Care Attorney who can advise you on issues surrounding their estate and long-term care.
Home versus Assisted Living Facilities. You may have a cold hard reaction, I did originally, but consider Assisted Living Facilities as a viable option. There are, in fact, many clean, pleasant facilities. Companionship of others your own age can be very beneficial for someone who is depressed and alone much of the time.
Retaining Consultants. If there is a question about whether the surviving spouse is capable of being alone, consult a geriatric doctor, social worker, or professional trained in evaluating the elderly. These specialists can be of help when you are not sure whether you can allow your parent to continue to live alone.
Varying Visiting Schedule. Should it necessary to place a parent in memory care, do not visit them at the same time every week. If the staff knows when you’re arriving, they may prepare for you at the regular time. You want to vary the time so that you find out how the facility cares for your parent all the time.
Welcoming Hospice Care. As the parent nears the end of life, use hospice care. They are very kind and helpful.
Do Not Try To Handle Caregiving Alone. Being a caregiver is emotionally draining. It’s stressful, and usually we are also dealing with our own grief over the loss of one of our parents and watching the decline in the other. This grief is deep and debilitating. Consider a support group, individual therapy, or coaching to find support and to express your feelings.
Take time to think through and acquire the information you need to best and most effectively carry out the caregiver role with your parents while still maintaining your work and home life. It’s not always an easy task to complete and feel you’ve done your best. We often feel inadequate when dealing with these issues. It’s important to remember there are others who are available and supportive during this time.
I retrained as a Life Coach specializing in helping others during times of transition. One difficult and stressful transition is from daughter or son to caregiver to your aging parent with Alzheimer’s/Dementia. I learned a lot from my experience and from those others I have helped. If I can support you in a transition with your aging parent, please do not hesitate to call.