Monday, November 5, 2012

Isolation: A Common Issue for Patients and Caregivers

Your friends don't know what to do. Your family members are uncomfortable around you and don't know what they should say.  Your new illness makes situations that used to be familiar to you feel like strange experiences, where you might not know who everyone is or what they are talking about. You feel lost and isolated even though you are in a room full of people.

Caregivers often isolate themselves too, as it becomes more and more challenging to fit in time with friends. A loved one's diagnosis of dementia means you will have to make medical, financial and even every day decisions for your loved one. This takes time away from other activities. Your loved one might need you to be with them around the clock, or to visit them several times a week, if they live in a care facility.

Isolation is not a conscious decision, it happens over time as caregivers are sandwiched in between caring for their loved one and working a full time job and/or taking care of other family members. Personal relationships suffer and it becomes difficult to have a social life for both people.

people who are lonely
Dementia is a disease with a
stigma that often results
in loneliness.
Dementia is a disease that carries with it a stigma that can cause your friends and even family members to back away from you because they do not know how to handle your dementia diagnosis. They might be uncomfortable visiting a care facility and traveling outside the home can be difficult for the person with dementia. All of this can cause both the patient and the caregiver to isolate themselves.

There are many causes of dementia, some types of dementia are treatable and can even be reversed to an extent. Others cannot. Alzheimer's is one dementia disease that cannot be cured and it is progressive.

The Alzheimer's Association lists Alzheimer's as the sixth-leading cause of death in the United States. 5.4 million Americans suffer from this disease; one in eight elderly Americans. Over 15 million caregivers now provide unpaid care that is estimated to value over $200 billion. These numbers are growing.

Complications of Isolation

Three years ago, I left my job to take care of my mom who developed Alzheimer's. She wanted to stay in her home, and I really felt that moving her to a care facility would be too disorienting and could possibly cause her to lose her will to keep going. In order to do this, I had to make many changes in my life. I no longer leave the house and work in a social environment or go to parties or get together with friends. Since mom became incontinent, it's more difficult to go to people's houses or go shopping or out to eat. It can be pretty lonely.

Here are some things that I do to keep active and to stay in touch with others;
  • Invite relatives over for dinner or a movie. It's best for mom if it's 1-3 people at the most.
  • Use social media to stay in contact with people who are interested in the same things I am. Caregiver support groups are a great place to start. 
  • Don't be afraid to reach out to friends and relatives and tell them that you are feeling isolated and sometimes need to talk. Ask if they can set aside a half hour a week just to talk, even if it's online. I was surprised to find that some of my relatives were also feeling isolated. There are many people who are lonely every day, and they may not even be caring for a sick loved one.
Aside from dealing with our own loneliness and lack of connection with other adults, there are some really practical reasons why caregivers do not want to isolate themselves.
  • If a caregiver gets hurt in the home and cannot get to the phone for help, the person with dementia will not be able to help them. If you are unconscious or bleeding and cannot help yourself, you need to know that someone will check on you each day.
  • Depression and anxiety over the future can cause both of you to experience a loss of quality of life. 
  • You might lose your ability to see changes in your loved one's condition because you are there everyday. Another person, a neighbor or family member, who comes in once a week can pick up on something you might not have noticed. 
  • Caregivers can get set into a routine that is no longer working effectively, but it's difficult to see that without anyone from the outside who can look in and give an objective point of view.
What To Do

Types of dementia
Pets are a great comfort to
people who are lonely.
  • Caregiver buddy system - find another caregiver who you can talk to.
  • Reach out to community networks such as a church or non-profit who can offer respite for you and companionship for your loved one.
  • Schedule regular doctor appointments so a medical professional can assess both of you and help you see signs of stress before they become overwhelming.
  • Have a regular schedule of some activity where you are expected, so if you do not show up, your absence can alert others that something might be wrong.
  • Have the newspaper delivered daily, even if you don't read it. Neighbors notice a pileup of newspapers
  • If you notice that an elderly or ill neighbor has not gone out food shopping, collected mail or put trash out, check on the person.
Being a caregiver presents many challenges, such as avoiding burn out. Avoiding isolation is key to keeping yourself healthy and able to face each day and the challenges it will bring. It can be hard and our natural inclination is to not want to bother other people or ask for help. Your health care professional should be able to put you in touch with a social worker who can make suggestions and give you the contact numbers for resources in your area that can help you and your loved one maintain your quality of life.

Caroline Carr
Caregiver and Contributing Writer


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