As a Physician, I have seen every aspect of dementia caregiver fatigue. Many people take on the role of being a caregiver for a loved one with dementia without realizing the task they have decided to undertake. This is due in part to their lack of understanding of the progression of this disease process and the challenges it presents. It doesn’t matter if your loved one has Alzheimer’s dementia, Fronto-temporal dementia, Vascular dementia or Lewy Body dementia to name the ‘big’ ones. The disease process progresses through the same steps, no matter the diagnosis.
The first thing you must do is admit you cannot do this alone and get a support system. One of the best resources is family and friends. Don’t be afraid to ask for help, and do this early on in the disease process to allow your loved one to get comfortable with the people that will be involved in their care as well. You must remember that people with dementia need a ROUTINE! So, when developing your support system, consistency is the key. Don’t try to introduce a new face every day. When you involve other family members, it is important that they come to you, don’t take your loved one with dementia to a different place every day…you will have problems if you do. Develop a routine and include things you and your loved one enjoy doing like going for a walk, gardening, listening to music, reading a book out loud. Remember, if you become frustrated, call someone and talk or ask them to come over and give you a short break.
One excellent resource is Adult Day Care. I am a big advocate of this. Typically, the person with dementia goes for 4 hours a day, three days a week. This serves several purposes:
- It helps your loved one remain social, interacting with other people
- It provides stimulation with activities such as games, playing cards, music, etc.
- It gives you time to take care of yourself
The key is to get your loved one involved as soon as possible. Once a loved one with dementia begins to isolate, and they all will, it is next to impossible to get them involved in something like this. This has to do with the fear of the unknown experienced by people with dementia. By starting them in Adult Day Care early in their disease process, they get used to it and the people they encounter and many families actually report their loved one looks forward to going.
Later in the disease process, when behavioral issues develop or when sleep at a premium and exhaustion is setting in, look into to Respite Care. You will need to get your Health Care Provider involved to order this, and typically Medicare and Insurance help with the expense. Respite care involves admitting your loved one to a facility equipped to deal with the issues that have caused your exhaustion. It usually gives you one to two weeks to rest. I recommend you seriously consider taking a vacation. Remember, providing care to a loved one with dementia is a full time job! Everyone deserves a vacation from their job, so why not you? Don’t make the mistake of admitting your loved one to a respite care facility and then spend every waking minute there with them. Enlist family members to be the contact person for the facility and truly take this time and rest, relax and revitalize yourself.
Another great resource is Home Care. Again, you will need to involve the Health Care Provider to get the necessary referral. Home Health Care can send in Personal Care Aides to assist in personal care issues, especially when your loved one is no longer able to assist in things such as bathing, feeding their self, and they have become incontinent.
The most important thing for you to learn is the signs of caregiver DEPRESSION:
- Loss of energy
- Constantly feeling exhausted, even after sleeping or a break
- Neglecting your personal needs, such as getting your hair cut, going for routine medical care, going to Church, going out to eat or talking with friends
- No satisfaction from what you are doing, feeling useless
- Becoming impatient, irritable or angry with your loved one
- Inability to relax, especially when help is available
- Feeling helpless and hopeless
You MUST get professional help! You may need medication, as depression is a hormonal imbalance in the brain. Consider counseling, either through a licensed professional or your clergy.
Remember, you are not alone. There are a vast number of agencies, both private and government run, that can offer the much needed help you will need in this journey you are taking with your loved one. Reach out and ask for help, you will be glad you did.
Author: Pam Hiti
