Caring For Caregivers

By Keith Coates  
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caregiving handsI was caregiver for my wife, Carol, through her eight plus year battle with dementia. I went through all the stages and stress of care-giving. By sharing my experience, I hope to give you a clearer perspective of this side of the dementia equation.  Early signs of dementia can be difficult to recognize as many of them can also be attributed to normal aging, stress or depression. If your loved one experiences any of these symptoms, consult a physician for a proper diagnosis - cognitive changes in memory, difficulty in performing familiar tasks, language problems, putting things in odd places, behavioral changes in personality, mood changes, passivity. Observe his/her behavior and look for patterns in these tell tale signs.

Caregiver stress is very common. Symptoms include denial, anger, social withdrawal, anxiety about the future, depression, exhaustion, sleeplessness, irritability, lack of concentration, health problems. If you experience these symptoms, get help to manage your stress – make time to talk to your doctor. Guilt is perhaps the biggest single issue for caregivers. None of us are perfect – accept this, do the best you can, and don’t beat yourself up when you don’t do as well as you think you could have done. This is one issue to discuss with others in a support group – if you bottle it up it will destroy you. Admitting to guilt is not a sign of weakness. You do not need to be perfect caregivers. Be caregivers who care.

You are often the sole caregiver – you can’t depend on family or friends. If you crack under the strain there may be no one to take your place. Looking after yourself is vital. It is not selfish. It is the most unselfish thing you can do for your loved one. To manage your stress, join a support group, access online discussion boards, make time for yourself, and get help. You can’t do it alone.

Caregiver fatigue is linked to stress. These are warning signs – do not ignore them. If you experience these indicators, you have caregiver’s fatigue:

You are having bad days almost every day.

You feel like your efforts are useless or inadequate.

You have withdrawn from your friends and family.

You have lost your sense of joy in things you used to love doing and they no longer give you a sense of pleasure.

You feel depressed, irritable, or angry most of the time.

You sleep or eat too little or too much.

You have been sick more often than usual.

How to protect your loved one:

Make the home safe. This is like childproofing the home for a toddler. Ensure that any dangerous items like knives, cleaning liquids are safely secured, de-clutter, remove tripping hazards, use gates across stairwells, keep keys out of sight, put childproof covers over power outlets, and use night-lights. If the patient may fall out of bed, consider hip protectors for them, consider adding bed rails. Have grab bars installed in the bathrooms, and ensure water temperature is not scalding hot.

Minimize the risks of wandering. This is an ever present concern. Use childproof locks on doors, keep car keys out of sight. If the patient does “escape,” alert neighbors and friends, check in familiar places and dangerous places like waterways, highway crossing, and inform the police. There are electronic GPS devices available – Comfort Zone and Comfort Check In are two.

Take the car keys away. One of the hardest things for the caregiver to do. You are stripping the patient of independence. One day it has to be done. Even as dementia worsens, most patients are going to deny that they pose a hazard on the road. That places doctors and caregivers in charge.

Encourage exercise. It’s especially important for people with dementia. It won’t cure the condition. It can help ease some symptoms. It also can improve their mood. The type of exercise that works best for someone with dementia depends on their symptoms, fitness level, and overall health. Check with your loved one’s doctor before starting.

When you can no longer cope The day will come when every caregiver will have to face the decision of placing their loved one in care. Once the lack of sleep, the stress levels and the frustration get overwhelming, look for a good facility.

Criteria to consider: What is the resident/care staff ratio?/How do current residents look - content, clean, cared for?/What is the relationship between staff and residents?/How are staff/resident interactions – even if there is a language problem, body language can tell you a lot. Take the time to talk to staff, to residents, and to families of residents./What is the appearance of the facility – clean, nicely decorated, comfortable furniture?/Is the food cooked close to the dining and common area?/Is the food attractively served?/Is there medical staff on site? on call? do they make regular visits?/How frequently are residents bathed?

How accessible are staff and management?/How does the place smell?/What do the grounds and garden say about the facility?/Are there on site pets? Are pets permitted to visit? or stay with the resident?/What recreation is offered?/Is the style family based or institutional?

In conclusion, do not try to do this alone, ask for help, deal with stress, look after yourself, and don’t let anyone say that you are being selfish, you are not.

 

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