Wednesday, 25 July 2018
"Should we celebrate mom's birthday? I don't even know if she understands what it's all about. Why go to all the trouble if it doesn't mean anything to her?"
The answer to the first question is a resounding YES!
She will benefit
The "Happy Birthday" song, presents and cake go back to our earliest memories. Even the most unresponsive residents turn their head, listen, and may smile. For others, being the centre of attention is just so much fun. Most people enjoy being made to feel special.
Her neighbours will benefit
There is nothing like a party. We celebrate birthdays all the time and each one is so much fun. Even if there's no family visiting, even if they don't know the person, even if it comes out of the blue, the singing of "Happy Birthday" and celebrating together makes everyone happy. Residents reach out and congratulate the person celebrating, and enjoy the shared cake.
Her care partners will benefit
When you live in a neighbourhood, care partners develop relationships with residents. They care about them as people. They talk with them during care, help them dress and look good, take them to the hairdresser, encourage them to eat, know their families and care about their birthdays. When an elder has a birthday, they are excited. They want them to look especially nice, have a fun time with family and feel special. That's part of being a care partner.
You and your family will benefit
Your elder is a part of your personal history. They may have planned birthday parties for you, and they certainly made memories with you at some point. You can probably tell many stories about them. Even if they are not able to do much for themselves or respond as they used to, they are still there and a part of who you are. Their birthday means something, and should be celebrated.
A birthday is a family affair. In our neighbourhood, we celebrate all birthdays--residents, care partners, housekeepers, nurses. Everyone who is a part of our family. (Yes, we have a lot of celebrations. That's a good thing!) A birthday says, "The day you were born is special. You are special."
That's true. So celebrate!
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CARE Partner Wednesday--Who Benefits When You Celebrate?
Wednesday, 18 July 2018
Millie's family had just been through some horrendous months with her care. She was in heart failure, and it led to so many problems. Her legs swelled and leaked, her mood was all over the map, and she was seeing things that weren't there. Sometimes she was short of breath and needed oxygen. She wasn't eating much. They thought they were going to lose her several times. The adult children, who had jobs and families and responsibilities, took turns at her bedside, trying to help. When she finally started to improve, they were delighted to be able to move her into a home where the care was top-notch and there were activities to fill her day. After an initial adjustment, she began to make friends, join in activities, and stop calling them in tears. They breathed a long sigh of relief.
The stable period was short-lived. A few months in, one morning at breakfast, Millie complained of dizziness. The nurse took her blood pressure and checked her blood sugar and oxygen levels. Most startling was that she was no longer able to feed herself. She stared at her bowl of porridge, mystified as to what to do with it. And when she spoke, it was her native Latvian. She seemed to understand English but only replied in her native language.
Change, especially when stability is a brief respite and not the "new normal" we hoped for, is difficult. As care partners, you are depleted in every way--physically, emotionally and mentally. You gave everything to the last crisis, and here you are again. All the worries about your loved one's future have returned. On top of this is the pain of watching helplessly as someone you love hurts.
How do you cope?
Here are a few suggestions:
People can't help if they don't know the need. Use social media, word of mouth and any other method you can think of to get the word out there. Mom is sick again and you need help. Have friends tell friends.
Rally the troops
If ever there was a time to call in every last support system you have, this is it. "But I asked them for help last time." That's alright. People understand. This is difficult and you need help. Take every offer that is given, and then some. And if you ask and get a negative or luke-warm response, politely excuse yourself and re-evaluate that friendship.
What do you need? Moral support? Meals? Someone to visit mom in the hospital? Drives? Someone to clean your house? When people say, "Just ask," take them up on it. If you are embarrassed to ask, post it on social media.
One of the scariest parts of a situation like this is the unknown. You can see what is happening, but what does it mean? What is being done, and what, if anything, does this change for care in the future? What can you expect? Make an appointment to talk with your doctor, and have your pen and paper ready. Write notes and ask questions until you have a clear picture.
I'm sure you know this, but nothing is guaranteed. Even though balancing all the demands in your life may be overwhelming, and life is painful right now, you have your loved one with you. Spend a few extra minutes talking, holding a hand or reminiscing together. Treasure this time with your loved one as best you can, and make sure you say everything you want to. Hold them, express your love and be thankful for another day in which to do it.
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Care Partner Wednesday--Dealing With Change
Wednesday, 11 July 2018
This is it.
From the time you became a care partner, you knew this day would come. You thought about it logically, had difficult conversations, and made impossible decisions leading up to it. You knew it was coming. You saw the signs. But your heart refused to see what your head knew.
Until today. Today, the doctor declared your elder end-of-life and said that they would keep him comfortable.
What does end-of-life mean, and what do they mean by comfortable?
End-of-life refers to the time before a person's death when it is evident their body is shutting down, and death is imminent. It's different from palliative care, which refers to a person who cannot be cured and is supported by the best quality of life possible until they are end-of-life.
What is "keeping comfortable"?
- All unnecessary medications are stopped. Vitamin D, blood pressure and even heart medications are discontinued.
- All regular treatments such as blood work and blood pressure are ended.
- Special care is taken to ensure the skin doesn't break down because this is painful. The person is repositioned every two hours and a mattress may be ordered which is specially designed to redistribute body position when the elder can't.
- Impeccable care is taken to ensure the person is clean and dry because this also protects the skin.
- Mouth care is done with soft toothbrushes and a special solution which keeps the mouth fresh and inhibits bacteria. Vaseline is put on the lips and creams on the skin.
- Staff watch closely for any sign of pain. The dying person may not be able to express what they are feeling, but restlessness, grimacing and moaning may indicate pain.
- Often, a port is inserted so that pain medication can be given without constantly needing to inject.
What can you do?
So many things. Here are just a few:
- Talk. The hearing is the last sense to go, and this is your last chance to speak those words of love to them.
- Mouth care. Ask the nurses how to do it. It's simple and can make your elder feel so much better.
- Rub lotion on hands and feet.
- Sing. Hymns or popular songs you know they love. You never know what might get a response. Even if it doesn't, they may have heard, and it can only bring pleasure.
- Read scripture, especially familiar verses that bring comfort.
- Be there. That's all that's needed, really.
Families ask, "How long?" No one knows. Sometimes it's just hours, sometimes a day or a week. There are many factors affecting how long a person takes to die. There may be times when you struggle with exhaustion, and you wonder if you can last another day. Remember, you won't have this time again. Today, this day, or few days or this week, are the end of a long journey you have walked together.
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Care Partner Wednesday---What Does "Keep Comfortable" Mean?
Wednesday, 4 July 2018
Your loved one lives in a long-term care home of some kind. They have been stable medically for a while, and you are thrilled to see them involved in the life of the home.
Then one day, it happens. They develop pneumonia that doesn't respond to treatment or a condition that requires intravenous antibiotics. Perhaps the doctor is suspicious that their symptoms may be cancer and wants further investigation. Or because of their dementia, they aren't drinking enough and are dehydrated.
The doctor says they should go to the hospital. Ultimately, it's your decision. Going to the hospital will probably prolong their life and may fix the immediate problem. You may find out that cancer is present, intravenous antibiotics might eventually cure the pneumonia and your loved one can be rehydrated. Any number of 'fixes" might be possible, but are they right?
I can hear the voices. "Why wouldn't you send someone to the hospital when they can be helped?"
Funny you should ask...
Here are some reasons not to go to the hospital:
1. There are no broken bones.
If your elder has fallen and the medical team thinks that it's likely a bone is broken, send them to hospital. Even if there is a suspicion, you can send them for an x-ray and know what you are dealing with. However, if they are able to walk or move the limb in question, even with some pain (which may be a result of bruising) consider not sending them to hospital. Have the medical team assess them and the physiotherapist look at them and make your best decision.
2. They are dealing with multiple serious medical issues which are affecting their quality of life.
Heart, lungs, kidneys. They are all related, and when they start to deteriorate, it's a difficult balancing act for doctors to keep people functioning and comfortable. The heart starts to fail and legs swell and eventually weep. A drug is prescribed to remove the excess water, but it's hard on the kidneys. Perhaps they have diabetes that isn't well controlled, and skin in their heels and coccyx breaks down and doesn't heel. It can feel like putting all your fingers in a dyke with multiple leaks. Many of these conditions are painful and uncomfortable, and if you add another serious infection to the mix, is the best decision to go forward and try to cure it?
3. They don't want to go to the hospital.
Many elders have had at least one recent trip and may have had to go many times. They remember crowded emergency rooms, waiting for hours to be seen, spending the night in the hallway and other horrors of our medical system. Overworked, insufficient staff are a modern reality. If they say they don't want to go, perhaps you should listen.
4. Your elder is in the late stages of dementia.
There is nothing more frightening and disorienting to a person with dementia than to take them out of their familiar environment to the sterile walls and the cold medical world of a hospital. They don't understand what is happening, and sometimes they lash out in anger and fear. The medical response to this is to restrain and medicate. There are instances when hospital care is necessary for someone with dementia, but the ramifications need to be closely considered.
5. There are indications that end-of-life is nearing.
We've talked about some of the signs of end-of-life. Loss of appetite, difficulty with chewing and swallowing, excessive sleeping and other signs discussed previously, indicate to the medical team and to you that your loved one's body is shutting down. At this point, do you really want to subject them to a hospital visit?
If they are sick, and you decide not to treat aggressively, what other options are there?
Next week we will discuss, What does "keep comfortable" mean?
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Five Reasons Not To Send Your Elder To Hospital