Death, How To Cope When You Are The Caregiver

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Death and Dying issues to help caregivers by Francy Dickinson

Geo n francy oilMy Georgie has been gone for three months and I am adjusting to life again. I wanted to continue to share things with you. As you know, I began this blog to help myself and other spouse/caregivers with the issues that come up in daily care giving. I still want to be a voice in the wilderness for those that are giving their love, time, effort and attention to a loved one. Helping someone on their life’s journey is a very special and loving job…I hope you will find my words help you along the way. 

If you have been reading my blog over the years ~ you will remember I have always asked everyone to use hospice services when your senior is nearing death. You never have to be worried about it. The Hospice Services comes into your home and does an assessment of the senior and they share their ideas of how to help you. Their services are paid by a Medicare type of services…it then becomes a special Hospice Service expense and the medications and services are then no longer billed to you. So, financially, mentally and physically Hospice is the way to face the end of life issues with your loved one. It will help you overcome the worry and they will help you step by step…question after question.

That said; Georgie and I did not know he was at the point to call on Hospice. The doctors did not know what was wrong with George. He had a lot of tests and the diagnosis was not known. We had made another appointment for the next Tuesday to see the main doctor and talk to him about placing George in a care facility to review his health issues. In the mean time…we were home alone together. I was trying to understand how to use the oxygen, medications, catheter and take care of his physical needs. I was going on five days without real sleep and the situation was not good and we both knew it.  He was weakening by the minute and it was becoming very hard for me to do transfers and be strong enough to help him. We were ready for his “in hospital” care. I told George that after his stay at the care center I would be asking Hospice to come and help us and he understood that…but his end came before we could move through our plans.

Early on Saturday morning…George was taking his Albuterol breathing session. At the end of the session I went to remove the breathing mask and found he had passed. His eyes closed and he had stopped breathing. It was quiet and fast and I was heartbroken.

What I am going to talk about today is the process that followed. But once again, IF I had had the services of Hospice..all the following steps would have been taken care of for me. I would have been able to sit and be calmed by loving professionals and they would have taken over the different steps that come with a death while in their care. This is why I want you to NOT follow my lead…to avoid the sadness I had to walk through have the Hospice professionals by your side…caring for you and your loved one.

What to do when your spouse, or senior, passes and you are all alone:

  1. When George passed I went into shock. Lucky for me, I had my family and friends on my cell phone and I kept the phone close to me. I knew I was very tired and I had been afraid of my falling and needing help. So I was able to pull out my phone and call family and selected friends and our dear minister – to come and help me.
  2. Everyone arrived within minutes and each of them comforted me in their own way. They were not totally in the know…of what to do…but they worked together to decide on the immediate steps to take. I was in such shock, shaking and crying and just out of it…so they were gentle, loving and moved me through the process.
  3. We all knew we did not have to report the death the minute it happened. I had looked at the clock and knew he passed at 7:10AM but that was not really needed. I was just so struck with sorrow, I had no real knowledge of what was happening around me. That is why Hospice would have been so helpful…but my own support group did their best.
  4. Our minister asked everyone to come and circle around George and say a prayer and when we did that…each of us were then able to feel we had settled the tension and brought the love into a protective circle.
  5. If you have a faith that requires immediate burial, I suggest that you start today to make plans for the end of life. You will need to know the process and have numbers to call. In my situation, I knew that George wanted to be cremated, but we had no time frame to worry about. So we just took our time and did not call 911 until all the family members that wanted to view him, did so and at that time we made our call.
  6. Our local paramedics arrived and asked if they could inspect the body alone.So we cleared out of the room and they looked over things taking note that everything looked like a “natural death”. They wrote down the death and they made calls to the medical examiner and logged it in to the official book as a death with time and place written down. Then they alerted the police.
  7. A while later, the police arrived and they questioned all of us and asked questions about George’s health care and asked me to review the last couple of days. It was very hard for me to do this interview. I was still in shock and my mind was not able to connect properly with their questions. If I had had Hospice…that step would not have happened. Hospice is a legal service and the medical examiner takes their word for it. The police were very kind, but they had a job to do and they did it. Once again, they needed us to clear out and let them be with the body. When they were done…we were released to remove the body.
  8. We did not hurry…once again, we gathered together to say another prayer and wish George a loving passing. Then we called the mortuary services and they arrived to remove the body. I did not have to do anything personally. They simply enclosed the body and took it away. They were very kind and my family was very loving.
  9. My sister felt I needed to be taken home with her. I was still in shock and she wanted me to try to sleep and process the death away from the house.
  10. When I left my home, my friend and daughter-in-law cleared out the bedroom. They disposed of the sheets, pillows and medical things in the bedroom and master bathroom. They tried their best to clean the area so I could return to the house and not be upset. They did a loving job, that I am sure was very difficult for them.
  11. I returned to the house in two days. At that time, we had to go to the mortuary to review the details and pay for the services. They applied for the social security and veteran’s death benefit for me. So the basic paperwork was done.
  12. Now, this is where I will caution you. From that day forward, everyone I knew tried to help me. They gave me advice on social security, insurance, returning medical supplies, my own health, my mental health and so on. It was a constant barrage of information and suggestions to follow their opinions. This was the hardest time for me. I did not want to be rude…I listened and tried to understand what they were saying. But really, it became total overload.
  13. I will ask you to simply, sit and be quiet. Write down things and numbers and make your notes very complete…this is no time for shorthand. Then just take it easy. There is no time frame of getting services and help, insurance, social security and such done. Just do it on your own time.
  14. As usual…others try to take over and care for you. But you have to do it all on your own. It is best of you ask someone to drive you here or there. When we are upset the world does not need us behind the wheel of a car. But just write down a list of to do’s and slowly work through them.
  15. George and I had already talked through end of life issues. I knew he wanted no memorial and wanted a cremation. So, that made it easy for me. What does your loved one want? This is the time to talk and get it out in the open.
  16. The doctor had us fill out the no resuscitate papers and post them up on the kitchen door so the EMS could see them.  We talked about the issues of care at the end of life. So we were in place when his death happened. But what about you?  Do you have your end of life issues down on paper? Please do it for you and for your loved ones. Don’t make more work and worry for the loved ones left behind.

Lessons learned. I am still working on paperwork and details of my husbands death. I am still trying to learn to sleep and eat properly again after so many months of 24/7 care giving. It’s a hard road and I am walking it slowly, alone, but not afraid. I have support of friends, family and my small dogs. I am still working on my feelings of loss and I am still raw with my emotions. But I am taking care of myself now.

I gave care to my mother and my husband until their deaths. Now, its time for me to care for myself. Its hard to do…but I am trying day by day to form ideas of what my future is going to be. I so miss my Georgie’s smile and I can not imagine how I will live my whole life forward without him. But day by day…I learn and do.

I hope this helps you to prepare and take the fear out of a passing in your home. I cleared the house with love and blessed George on his way. I am sleeping soundly in our bedroom. I got new bedding, I brightened up the bathroom and I cleaned and cleared away the sadness of care giving in my surroundings. I now find my bedroom a place of comfort for me and I enjoy spending time there.

I will say…having my family and friends as well as my community of loving friends on Facebook, Twitter and through the group that follows my blog was totally positive and loving for me. I also had a #WritersThatChat group that continues to support me through the long grief process. I am a lucky girl to have had such a dear, as George, with me for over 30+ years. As I walk down my own path of life…I do not do it alone…I am surrounded with love.

Blessings on all that you do for your own loved one. francy

PS/ I find a little reminder of George is so healing for me. I blew up a picture of him and have it in my bedroom with a candle to light. I can have a good chat with him each day…kiss his picture and feel his love any time I am in need. Grief takes its own path…some move through it fast and strong…others have more up and down days. There are no rules for missing someone that you loved…but being ready for the hard time of passing helps.

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What if someone said you were going to die soon…then what?

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How to handle the journey to the end of life by francy Dickinson

My little Annie and her never ending love.

My little Annie and her never ending love.

Dear Francy; I am 47, I live alone and work in a doctor’s office. I have an adult son that is now in France with his own family and his dad. I am alone, no one in my family is left but me and a distant cousin. I have not been well for quite some time so I have very few friends and no one that checks on me or is a close confidant. When the doctor told me – my time was close…I just came home and sat down on my patio and wanted it to end right there and then. I was given your name by a friend, she said you ‘knew about things’. I wish I knew about things…I was wondering what you think I should be doing? I just don’t have the energy to think lately…and yet, I want the end of my life to be joyful. Do you have any ideas for me?

Yes! First, a Friend told me one day…that you should think of death as the beginning of a new life. Think how happy everyone is here…when a new baby is born into our family or community…we all give showers and gifts and stand in line to hold the child with great hope. What if your death here…is like a new child’s birth on the other side? What if when you enter that realm or dimension…you are the star…you are the one everyone is waiting for? Your family that has passed on, dear old friends…anipals that have passed – all standing in line for hugs. What if you are the center of attention? Just a thought to throw around in your mind.

I sent you a personal note and asked if I could share some information on the blog and you granted me that right. So, I will talk about the idea of death that bursts forth when anyone is faced with it. The recent tragic news about people dying in terrible fires and storms, children being shot in their schools and cars dropping off of bridges without any notice. You can be faced with end of life situations at any age…but for you and many, its health issues that take over the body and cause an end to life. You are still young, but a person’s age does not matter, death is death.

I was faced with 4th stage cancer in my twenties. So I know the pain and trials of thinking about death. I know the feeling that just making it through a day to day situation seems overwhelming. But the truth, as I know it…is that life enfolds and I lived on. I lived through the procedures, the pain, the confusion, the trauma and thirty years later — I am still here. So timing of our death can be very tricky and I would not get caught up in dates, times or places of your own demise…it may be tomorrow…or it may be a very long way, away.

Since you are alone, you have the privacy to be emotional when you need to be. You don’t have to be brave or polite for your family or older parents…you can just be who you are and that is a gift. That means that you have the ability to sit on your patio and enjoy the air, the noise of life and the sunshine….its a good place to be. I happen to be a great believer in trees. My family has a history of staring at the beauty of trees, as they made the last part of their life’s journey. It gave them all a feeling of calm, peace and they often talked about things they saw in the trees after hours of staring at the limbs swaying and leaves shimmering. Being with nature when you are tense and worried…is always a great calming effect. You get into the feelings of the day…the noise of the morning, afternoon and evening…and the quiet of the night. Some times…you just need to connect to that and I think its a good thing.

I know your son seems like a lifetime away. But one day he, his children or grandchildren will want to know about you. Its time to prepare for that. When you are fresh in the morning…start to pack a box for your son. Put everything in protective sleeves or ziplock bags and add notes to them. Example: Your wedding ring…tuck in a note about when you got it and how much you loved to wear it. I did this with my sister when she was passing with cancer…those little gifts and notes to family and a few friends…were held like gold when they received them.

Go to Ancestry.com and do a simple search and get your immediate family members in place. Then scan in a few pictures and things..so when someone does research on your family…they will find your smiling face and a small outline of your life. They will read a few things about your own father and mother and maybe you knew your grand parents. That is like a gift to your great, great grandchildren…please give it to them.

Call Hospice. They will come and talk to you and talk you through what has to be done to keep you safe and well and at home, if you choose to be at home… through your end days. They are trained for all sorts of situations…so you will be surprised at how much they will do for you. They will clean your home, help you with a pet, find a home for your gold fish…they do what you need to make a life transition without worry. Its a wonderful group and is free to all of us.

Ask someone you know, to be your health care directorship. Maybe it will be a friend at work, or the doctor you work with or anyone that you enjoy talking to and understands your true voice. When you fill out the paperwork, you will see it will ask you what you want to do about your decisions…like would you want to be on prolonged life support? Think on it and then answer. Do you want to be buried or cremated? These questions are not there to upset you…they are there for you to make the decisions before you get so ill that someone else makes those decisions for you.

Let people know you are on a limited time frame. My husband has long talked about an incident that happened in his life. He was married with children and his father was suffering with Parkinson’s. His dad went into the hospital and his mother called and gave him an upbeat talk about it and told him not to worry to come and visit the next day. My husband was going to do just that and he had in mind what he was going to bring to his dad and some special treats he was going to include in his gift.  Then early that morning a call came that his dad had passed. My husband was so upset that he never forgot about the missed chance to see his dad…and he has always been stuck on why his mother did that to him?
Give your son a call and let him know the situation. If he wants to come and see you…let him. If he is fine with it and just wants to chat and send you love over the phone…then you can deal with that too. But do not take away the choice of your son to express his feelings for you before you are no longer there. Gift him, the choice. Being brave and not wanting to rock a boat, is really being selfish and taking the power away from your loved ones – to give to you.

Ask what or how the end will come. A lot of people do not want to know this..but Hospice will explain to you what is ahead. When I have worked with them…I have found that this information takes the worry and fright out of what is happening to you when your body is weak and you are no longer able to understand or do for yourself.

Do what pleases you. If you like hamburgers eat them…if you like chocolate eat it, if you like to drink martinis ~ this is your moment. No diet is going to change your health when you are in the final stages of health decline. Be good to yourself…do as you please…if you want to take off your bra…or wear your hair on top of your head. Do it!

Do not spend energy on things that have no meaning. I try to explain to anyone in your place…that your body only has so much energy…so how you use it each day is very important. Think of your body as a laptop on a plane trip. You have an hour or two of battery time, before it has to be recharged…so what are you going to do with that laptop?

Say NO…if you are asked to do something that you do not want to do…you now say, NO.

Do not push away people. You know I have gone through a strange life of care giving. Not because I wanted to…I am not a nurse type person, but because I was in the right spot at the right time to help a few of my family members, friends and others. I could have said NO. I could have gotten someone else to do the care giving..but somehow I was put there to learn and to do. Its just how life unfolds. But from caring for my dad in his last days…he shared some stories and ideas with me, that I would never have known. Being with my sister in her last days gave me a clear appreciation for her helping my mother to raise me. When I took mom into our home, in her last days…showed me that I was strong and could keep my mind working even in crisis. All of those actions and care giving…now allowed me to be here for my dear Georgie, as I am now caring for him during his Alzheimer’s/Parkinson’s journey. It has not been a bad thing, or a sad thing, but a journey and a gift that they gave to me. I always was a very self-centered person that only worried about my own life…I have now been shown how important it is to do for others and to give them your love when they really need it. I have learned that my sense of humor has as much power as my care giving…because nasty health issues are not fun…and if you can not laugh in the midst of chaos…there is a big problem in your world. The care giving was not a burden, but an awakening for me as a person. The care giving turned out to be how I was meant to give back and I am pleased that my family members gave me the chance to learn that…I am not mad about being ‘put out’ over the work. I am honored. So do not think that you are asking to much when you ask care givers to help you…they are there to be next to you during this time. Maybe something you say or do, will enrich their lives in a way that never would have happened without you.

If it is true that giving is blessed…then you have to remember than someone has to be the receiver in that process. So you have given all through your life…now, its time to be the receiver and let others be blessed on their kindness and giving to you.

Last…there is nothing to be afraid of — if the end of life has nothing. I mean if those that believe in an after life of some kind…are wrong…so what? Nothing is nothing, you don’t have to worry over nothing. But if we are right about the end of life being a beginning of another experience…then being prepared and thinking of what you would want in that new experience is worth your energy. Pushing through the fear…and knowing that you will be swept up into love…is so important.

There is no being with someone when you die. We are all going to be alone. Even if we have a big family around us…the experience is ours alone. All you have done will stand for its own value. Today, think and do what feels right. You said you like to do watercolor…so paint! Do not care what it looks like, if it’s shaky or the colors are not perfect…just open up and paint. Feel the inner you coming out and allow it to talk to you. Maybe it will be sad and dark…or maybe it will be beautiful and light colors, or maybe it will be joyous and just shine. .Allow that inside of you…to spill out. There are no more rules…you are on your own ride.

Know that you and your life had meaning as all lives do. I think of my sweet little wire haired fox terrier, Annie. She passed years ago. She gave me so much joy and love and I still think of her as being by my side. She is dead, she is gone…and yet I feel her close. I remember how she expressed her love to me and it still makes me feel special. She was with me only nine years, such a short time on earth and yet…she gave me a lasting feeling of love and being a good dog mom. Since I have not had any children of my own…those feelings of motherhood were expressed with her and she – in return, left her love behind.

You are loved…and I am honored to have met you and that you have shared your feelings with me. Blessings, francy

When You Say ‘Enough’ To Giving In Home Care

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How to make the decision to end the ‘in your home care’ of an elder. by francy Dickinson

Toots w Kathy, Merrilee n Francy at mother's downstairs area

Toots w Kathy, Merrilee n Francy at mother’s downstairs area in our home

Dear Francy: I don’t know what to do…I am in trouble and too tired to make a decision. My husband has MS and he is still functioning on his own. He is in a wheelchair but he has a good life at home, as a writer. We have three children ages 10-15 years and they are in the swirl of life. I have been a part-time cook at the local cafe. My husband’s aunt is all alone in the world and very dear to us. We have a mother-in-law outbuilding in our backyard and we have fixed it up and moved the Auntie in, to be close to us. She is a quiet and kind person that was doing for herself but she needed a lot of our help. It all seemed great for the first three months she was here. Then she got the flu and complications and she became more frail. Now, I have to care for her…running back and forth over the path to what the kids call “the cottage”. I am getting so tired and the house is beginning to feel the pressures. I don’t know what to do. Our Aunt has done nothing to upset us…she is just getting older and needs more care. Do you think this is just a bump? Or is this going to spiral down and take more of my time?

I can not tell you that, I am not a professional medical person. I am just a person that has years of giving in home care to my family and elders. So, what I will do is write down a list of things to help care givers with ‘in home care’ situations and you can pick and choose what might help you. Just remember there is no guilt when you try to give help and love to another…life changes and things often have to change. You are really in a situation that many others are…you are sandwiched in between job and family vs the care of a senior. Just the kindness of your heart, to make room for your beloved Aunt, is very dear to me. Thank you.

IDEAS OF HOW TO DECIDE, WHEN TO GIVE ELDER CARE IN YOUR HOME:

  1. YOU  have to save yourself first! My dear friend Cheryl, was a flight attendant for 25 years and they were taught to be the first to grab the oxygen when it dropped down! So they could stay clear headed and help others. Its a lesson for all of us to remember when we face situations that require so much of us as care givers.
  2. START SMALL. If you just take time to sit with your spouse and go over the needs list for your aunt and decide who will do what. Do not forget your children, they are all old enough to do little things and be in charge of this or that. Maybe they will take over more of the “in your house or yard chores” so you can go and take care of your Auntie. Be honest…this time can be an amazing learning lesson for your children and you. Giving up some of your own wants and doing for others…is what characters are built on. But this organization meeting will show you how much time you are spending. I don’t want to be out of place saying this…but a business meeting is like a “Come to Jesus”. You finally see what is in front of you.
  3. ASKING FOR HELP: If your Auntie has money then you have to be honest with her and get her to allow you to hire help. It could be a cleaning lady for both places that allows you to forget the little things a bit. The one help I insist on is a bath lady. I have said this a million times. They are worth their weight in gold and they should be the first on a sparse budget. They will take that pressure away and get the bath and hair all clean in a ‘faster than light’ action. Plus, they are another friendly face for the senior.  NO MONEY? Then you simply have to go down to the social services and get your Aunt signed up. They will do a review of her income and your care giving and they will provide help to make it easier for you. They will pay for her medications, they will provide food stamps for her food, they will pay – you – for care you are giving. (they do not pay for a spouse but they will pay for a family member or friend) Yes, in return they will make demands. You have to keep a clean area for the senior and do a few hours of nursing classes to teach you how to give healthy and wise care. But it was a life saver for me when mother’s care went into overdrive and I was not able to work any longer.
  4. BE HONEST: If you pretend life is fine, you are signing your own health decline order. This is not easy stuff…you simply have to say…I NEED REST. You can ask other family members to come one day a week, so you can ease your strain or simply sleep. You can ask your employer if you could just work two days instead of four days. Your income from the state should cover this change. You will find an increase in your expenses. Seniors require expensive food, protein drinks, Depends, extra electric bills with the increased clothes washing and heat bills. (seniors need heat all year round) Talk, the more you talk and ask for help…the more your family and community services will hear you and add you to their listing.
  5. COMMUNITY SERVICES AND FAITH BASED HELP: Even if you do not belong to a faith group, your local church, temple, etc is there for you. You are a part of their extended community and they will reach out to you. You may find that they have a list of retirees that are willing to come and just visit or sit with your senior so you can leave the house and shop. Or the senior can get a good laugh with a person of their own generation. You may find they have a food bank to help with extra items, they also have visiting lay-ministry people that will come and just talk with the senior. Do not get uppity about community help. Those services are made up of others that have gone through what you are going through and decided to put a group together to help others. Take advantage of their ideas and service time available.
  6. RELEASE ANGER: I have a list of families that are angry with their relatives because they did not help with giving care to their elder. If you can ask family to help you…to come and visit when you need to be at school for the kids…or to buy your elder a pair of slippers or new housecoat…then do it. But if they don’t…let it go. Just do not spend your already low energy on anyone that is not willing to reach out and give you a hug and help in your time of high stress. Those folks are not worth it. Let it be…
  7. GET A POWER OF ATTORNEY AND HEALTH CARE DIRECTIVE: I am afraid I often say this, so if you read my blog…its a repeat. But there is nothing, and I mean nothing more frustrating — than to give care to an elder on a daily basis and then have some punk realitive walk in the door and tell you that another anxiety medication is not really needed for your elder. Like they know! No one knows more than the “in home care giver” so you need to insist that you can make the decisions on the behalf of the elder. Then it will be your moral duty to make them in the best way you can, for the elder. Trust me, each time I talk about this…people think…OH my sister is better with forms and she will do it. NOT 
  8. GATHER A HEALTH TEAM: Add your senior’s family doctor, get a specialist to at least see the elder once and review things. Get a nurse to talk to or just get a nurse practitioner to be your main care giver reference. Now lets talk real. Doctors diagnose they do not treat you. A nurse or care giver treats. So you need to learn how to ask the doctor questions and understand the chemistry of the elder’s health problems. The better your questions are, the easier the care giving will be. Then you need to know what will happen at home…and what that means you will be doing about the care. If you go through a bump, ask the doctor for in home nurse care, he can order that and the nurse will show you how to treat the elder. Bring in a nurse contact or help line to help you decide how to care for the elder at home and a pharmacist to explain the medications needed. The doctor will give you drugs and what is called an Rx for things like physical therapy, wheelchairs, in home help of an occupational therapist, message, therapy sessions, supplements etc. This is important; anything your senior needs should be written as a prescription so the insurance and medicare will accept it and help pay for it. Always ask the doctor to prescribe something and to give you generic medications so you are not going down a big hole when free services and medications are available to you.
    YES> THIS MEANS YOU NEED TO BE ORGANIZED. So don’t be a baby…the more you write down, the more questions you ask, the more you get clarified…the easier the care giving will be.
    Remember; talk to a nurse about home care tips…read my blog and learn home care tips. Use the Internet for extra advise and read it all…then make your own decisions. Talk about supplements that will help the elder and special ways to use food and exercise to increase the abilities of any senior in any stage of decline. Understand bowel movement difficulty, side effects of medications, dizziness, avoiding falls, eating difficulties, hydration challenges. All these things will come up so you need to write them down and have doctor or nurse show you how to treat the problems at home. It is not scary if you understand and are prepared.
  9. NO< NO< NO: I just do not want to clean a bottom, or smell blood, give a shot, or lift the elder up out of a chair. OK…see, that is being honest with who you are. It does not make you a bad person. You need to draw a line in the sand and when you come to that line the elder is going to be placed in a care facility. Everyone has a line, yours maybe closer than mine…but that does not make me a better person. I have a disposition to give care. I never knew I did…I was never a girl that said I wanted to be Nurse Francy. Now I know, that I can turn off my mind and just give the care without getting sick or too involved in the immediate yucky situation. Some can, some cannot. Know yourself and draw your line. I have a line. I drew it with my mother and now it is firmly in place with my husband and his decline with Alzheimer’s. They have to walk or at least be transferable. I have a very bad back and I simply can not lift a huge person and walk around without a great deal of pain. What is your line in the sand? 
  10. HAVE A PLAN: Is there respite services you can use or senior day care services? Ask and find out how the local community is prepared to help you with rest. There needs to be a plan, where would you take your elder if they need to leave you? Some where close so you can visit and keep an eye on their care.  Have the place in your mind. Go and visit, tell them what you are doing and ask if they take medicare patients, if they have a long waiting list, if you could be on a secondary list of placement in case of emergency, etc. Once this is done, you will then be able to relax and know a quick transfer to a facility will not end up in you moving the senior again because the facility was not up to your standards of care. Call Hospice and ask them when you are to use their services…ask them how to judge the situation and they will walk you through a review of how to use them. So, if the senior is sinking down and wants to die at home…you can get help. Hospice also has facilities for end of life care…so find out the best way to use their services, now. Lastly, know what would happen if your elder passed in their sleep. Who do you call, is there money for a funeral, do they want a funeral. Do they want to be buried or cremated? Get it done early in the time you take the elder into your house. So as care accelerates you do not have to add another layer of upset to your own life. Get all this over and done. Then you can turn your attention to today…and making it a day of joy for you and your senior.

You may think no one cares about you being tired, upset and stressed over senior care. You may think that no one has ever been where you are today…but you are wrong. Generations have faced the same problems and found solutions that worked for them. One step at a time…give it time. A senior may have a big dip…and then in a week or two they will regroup, re energize and come back up in strength and life will go on again. Give it  all time. You take time to get over the flu…a senior takes more time. But encourage them to get well….keep them moving, drinking, eating and laughing. Let them know you want them to live…to the end of their life. Not just make it through to end. Keep your heart in the race and it will work out. Care giving is just a short part of your life time. The gift of your giving your heart…will come back to you in so many rich ways…year after year.

Blessings on all that you do for your family and your dear elder. francy

NOTE: Will you sign up to receive notice of my blogs please? You will find the button on the right side of the screen towards the top. I do not write as often now that my Georgie is in need of more and more of my own time. But I am here to do all I can to help. So send me an email if you need help. f.

10 Tips for Great Doctor Appointments 4 Your Senior

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Info on how to prepare for doctor appointments for you or your senior. by francy Dickinson

George on his weekly out and about.

George on his weekly out and about.

Dear Francy: Mother was complaining for two weeks on how she was having bowel problems and a soreness in her rib cage…I made the doctor appointment. We go…then she says nothing! He asks her how she is and she says; “FINE”  I am so frustrated and mad that I wasted a day off work for an empty doctor appointment. HELP!

Hello!  Are you sure you are not living my life? I have been there and done that so many times that I sat down and went over all the steps that would give me quality time with busy doctors. We all can get scattered and forget, or not really ‘think’ about our body and what to ask the doctor. So here is a listing to help you never again feel cheated at a doctor’s office.

George is going to his memory clinic on Friday. We have had three appointments that have had to be cancelled, due to all sorts of things, so this time…we need to really go and hit the nail on the head. I am taking time to do all of these steps this week with George. I know this will help you. It has made my time at doctor’s offices go smooth and easy.I have even had doctors “thank me” for being so informative.

10 TIPS TO HELP YOU MAKE THAT DOCTOR APPOINTMENT INFORMATIVE:

  1. Quiet yourself and think about you/or your senior’s body. What has changed since the last time you were at the doctor’s office? Even if the doctor you are seeing is a foot specialist…write down your whole body changes. Doctors diagnose with detailed information. They are best when they know the most. Give them a list: slightly dizzy when I get up to go to the bathroom at night – gained 10 pounds and feel like candy is my best friend – allergy headaches that really bother me – my mouth is dry all the time, lately – my nails are breaking a lot – my hair is getting thinner. Go ahead. Sit and think about this, talk it over with your senior or spouse and write it down. Do not be afraid or embarrassed to share the information…this list could save a life.
  2. Write a letter to the doctor about your care giving elder. Just let the doctor know. I have written my letter for my husband’s friday memory clinic appointment. I have taken time to be quiet with myself and just write down his changes with his Alzheimer’s. I have had to insist on him getting out of bed, he only feels safe there. I have forced him to walk 10 min. in the hall – twice a day. His shuffling is so bad that I am very worried over him not walking at all and I would lose the ability to care for him. I even did a short video to show him on our tablet. I am not sleeping (see I talk about me too) I find my temper is getting short over the silly things he does. Now you go ahead do your letter and let it all flow out. Let the doctor know the things your senior has told you during the last couple of months. Write it down and give it to the check-in desk and ask the doctor to read it before he comes into the appointment. The doctor will be so grateful.
  3. Keep a list of things you hear on the radio, from friends or read online about the special medical problems you or your senior may have at this time. Maybe you heard a tip on supplements to help diabetes, or a special test on a new drug, or a place to go and join an experimental test. Write it down, so you can remember to ask the opinion of your own doctor before you proceed. Use his opinion to help you make your “own informed decision”  about treatment.
  4. Walk in the doctor’s office with an updated list of your medications. Keep this list on the computer or ask the doctor to print if off for you. You need to know each name of the medication, the amount, the time to take it, if it is taken with or without food, and what the medication is doing in your body. If you don’t know those things take a trip to the pharmacy and talk to them. You need to take pills that make sense to you and understand the reason you take them. That way you will be taking them on time, in a a daily manner. Many medications simply stop working if you take them 2 -5 times a week. So you may “pay” for a medication and then not take them properly or not understand that one medication may assist another. This is serious stuff. If you do not take your medications…then open your mouth and tell your doctor. He is assuming that you are taking it. So each time you walk in the door, he is trying to diagnosis you and if you do not have his prescriptions in your body chemistry…he is unknowingly making a mistake.
    This is important. KNOW YOUR MEDICATIONS AND TAKE THEM PROPERLY. If you forget to take them…find a way to remind yourself. There are cell phone apps that will do just that, or ask your care giver or family to call you…but take your medications!
  5. Be informed. I often go to the doctor with my sister because she tends to blank out when she is faced with the doctor’s answers to her questions or diagnosis.  I go and take notes. But now, we all have cell phones with recording buttons. When the doctor is starting to tell you what is wrong with you or how to treat it…have your record button ready…let the doctor know you are taping and push the button. Then you can play the information back for yourself or your family to review.
  6. Dress for success. OK you are going to the doctor, wear something that is easy to remove and put back on. Wear shoes that are not the heaviest you own because you will be weighted-in. Take off your coat before you get weighed and take note of your weight at the doctor’s office so you can go home and adjust your own scale. Also write down your blood pressure, if it is high you can then take it a few times at home to make sure that it does not stay in a high range. Blood pressure is best taken at lunch time…relaxed and repeated so the doctor can see the time frame of the numbers. Same with weight…weigh in the morning, twice a week and write it down in a notebook. When you go to the doctor you can show him your progress up or down over a time period so he can look for glues.
  7. Seasonal issues. Keep a green marker for your calendar journal to mark seasonal problems. Maybe you gain weight around the holidays…write it down. Maybe you have spring or fall allergies, write it down. So the next year…you can look at it and know that it is repeated and needs to be talked about with your doctor. Allergy medications have changed a lot in the last few years. Ask for help, runny noses may not be life threats, but they do keep you from going on walks for your health. Medications change and update…always ‘ask’ the doctor about new medications and if you can drop some that you are taking. All medications are changed just one at a time…so the doctor and you actually know what the reactions are for that one drug. Then you can make another change…so be patient. Maybe your weight has gone down and your diabetes pills or water pills are no longer needed. Do not marry your medications…think of them as fluid and up-datable. There is always a doctor that will give out medications just to keep you quiet…so make sure you “ask” why you are getting a medication and then do a little homework online to make sure it is something that you need and you are prepared for the side effects if they show.
  8. Can you relate to your doctor? If you are going to a doctor that does not talk to you, or you do not understand. Tell him, or change doctors. Your own, or your senior’s health is what life is about. You need to understand..that exercise is needed to help your knee or maybe you need to stay off of it…or cold not hot must be used. If you do not understand then you are not healing and it could effect the way you walk for the rest of your life. Its a big deal! Do not be afraid to make a change of a doctor, or to speak up!
  9. Use a calendar on the wall to remind you of all medical appointments. I like to cluster them. I have George do his appointments in the spring and the fall. So, in one month we see all his specialist doctors. Then the rest of the time…we only go to the doctor if he is unwell and needs extra help. This way I am not trying to take him around to appointments every month…or twice a week. My mother got too weak for doctor appointments…so I found a local doctor that would come and visit her at home. Working with a nurse practitioner is also a wonderful way to check-in quick with questions and not have to wait for appointments with a busy doctor.
    REMEMBER: ER visits are to be avoided. You can catch germs, get overly tired and they are expensive.  Make appointments and keep them. That way the flow of your life will be calmer.
  10. If you have come to a point in your life, or your senior’s life — that fighting a physical or extreme dementia condition- is simply too overwhelming. Then you need to tell your doctor that too. The doctor will discuss palliative care. That is where you are treated to keep you pain free and comfortable. You will be assigned a Hospice Care Team that will come to you and allow you to relax and adjust to the end of life journey. There is no reason to drag elders around to doctor appointments if they have issues that are beyond a medical cure. No matter what your income..Hospice is there for you. You or your senior deserves to have a wonderful team of caring nurses and helpers come to you…to keep your needs met and the pain or worry level down. It is always hard to make that decision, but once made the Hospice team really knows how to take over and keep the elder in-care…comforted and given good palliative care.
    NOTE: Medicare and insurance bill either your regular doctor or Hospice. So you do have to make an appointment and have a good truthful decision with your doctor for this change of care situation. You need to also remember to ask for a disability sticker for your car and understand the doctor needs to sign a ‘Do Not Resuscitate’ agreement. I always try to remind you to get a Health Care Directive Form, signed and agreed on right away while the senior understands the issues.

I hope this will all be of help to you. Since I have kept my medication listing and added in the allergies that George has and his needs if he is put into the hospital on that same page….the doctor visits have been great. I express myself before the appointment and then the information is turned into the nurse at the check-in desk to attach to the file. The doctor then walks in the door, knowing what is going on and directs his attention and knowledge to help me and George make changes for the good in our daily lives. Some times there is no change, some times there is a medication change — other times there is just advice in how to make changes in our daily life to keep George as strong as he can be. Maybe we go to the Physical Therapist to help him get strong, maybe we have a respite to give me a break. All of the information that I share with the doctor, helps him make sound decisions that are based on our reality of life. I once told the doctor that a medication he prescribed was to hard for me to give four times a day. George has no memory and I can do morning and evening meds…but to add a few more during the day…means I have to remember things for me and for him. It was too much. The doctor said that was fine, he would change the medication to one that had a time release. You see how being honest helps everyone?

REVIEW:
*  Take time to review the body functions of yourself or your senior
*  Write down the information or changes
*  Be prepared with a list of medications that is complied from all the different doctors that prescribe to you
*  Be honest with yourself and the doctor

Thank you again for giving your time and love to your senior. Its a lonely world out there for care-givers. I appreciate you taking your time to share with me. I am here for you. Send me your questions and I will do my best to help. OH, I would really appreciate you signing up for this blog post…it will email it to you. I am doing less blogging because George’s Alzheimer’s is getting in advance stages and he needs more care. So the ups and down of my writing is easier for you if you just recieve the update in your email. Please add your email to the side bar and you will hear from me each time I write a posting….Thank you…and Blessings, francy

Panic-Dad has a cold and not able to walk!

by francy Dickinson                       www.seniorcarewithspirit.com

Dear Francy; Dad has had a cold for a week and today he is so weak he is unable to walk. He refuses to go to the hospital. I am unable to lift him and I have called a cousin that will take an over night flight to come and help me. What should I do?

OK, first Panic is not a word to use that does not get attached to calling his doctor for help and/or taking him into the ER. So remember, if you are that scared you need to be calm and take care of the situation with a call to a medical adviser and get him help.

Now, the options: One he has a mecial directive that says no hospital or resusitation. This is your honor to protect, but a cold never says I am dying to me- (it says; I’m sick, tired and weak – I need some meds to make me better. I may need some fluids and I may need some physical therapy to recover my legs)but I think that dying is low on the list of what will happen with a cold unless you ignor it and it goes into pneumonia. So, if I were in the house, I would call the doctor’s office. (who would probably just tell me to send him to ER)

I would take him to ER and they would give him fluids, check his vitals, and put him on a program to recover his legs again.  The least I would do is call the local Fire Department and have the medics check him out. I would not wait by the door for a relative, I would take action now. You are the care giver, your dad is too sick to make calls or decisions. So, use your intuition and react in a safe and appropriate way to give him care.

After that has been addressed; I want to assure you that many older seniors with different health challenges have problems with their legs and the slightest infection can take their energy down fast and that will keep them from walking. As they get fluids and meds and recover, they get their legs back again. So, do not immediately think he is off his feet for any permanent time period. It may just be a passing side effect of the body fighting an infection or other conditions in the body.

DO NOT ALLOW ANYONE TO STAY IN BED WITHOUT WALKING FOR MORE THAN A DAY! If someone is on doctor’s orders to be in bed and the doctor understands they are in the bed full time and can not get up – that is the exception. If they are simply unable to walk or stand without falling, they need to be treated by a physician and not you. They need to address what ever is bothering the senior that has produced this weakness.

Let’s go forward. Your dad has gotten some meds and has gotten his fluids and oxygen levels up. He has his sugar level in order, he has seen a doctor or nurse practitioner and he is back home. But he is still really unsteady and needs you to help him move around. You have a bad back or are very tiny and you are worried about caring for him in this state. Then you have to have him placed in a care center until he gets strong enough to meet the standards of your own home care. It maybe a week or a month in the care center but the doctor will write a prescription for it, just like a medication so the insurance can cover the cost. The care center will give him Physical Therapy to walk, monitor his vitals and get him strong again. If they can not do that, then he has moved into a new stage of care and you have to decide on the next step.

If the doctor or nurse has him back home and he is simply wobbly and can stand but not without you next to him, walk but not more than a few steps. This would mean that he has been examined and is on medication to take down his infection or handle his health challenge and he is on the mend. You will be asked to help him stand up and move him to the commode that will be placed in his room. You will have to help him up from the commode and get him back in his chair. An in-home nurse can be sent via the doctor to help you learn how to do the assisting so it will not harm you. Very small people, can handle larger bodies if they are taught how to move them.

He will have to do all the exercises that the Physical Therapy person has given to you. They usually have a sheet with the exercises printed on it. You and your Father will have to do those exercises a couple of times a day for his legs to get strong again. Older people lose muscle strength really fast and they need to re-gain it right away so it is not a permanent situation. Even if he is very ill with heart problems or cancer, he needs to move for as long as he can. So he will have to do the exercises that the professional PT person designs for him. You will have to assist him until he gets strong enough to be on his own.

If he falls on the ground – do not even try to pick him up. Call 911 and the fire department will come and lift him to his chair or bed and check him out. If they think he has injured his body they will transport him to the hospital. If you do not want him transported or given resuscitation you have to have a piece of paper posted on the wall that releases the medics from their duty of rescuing the patient and doing all they can to save him. This paper is called A Do Not Resuscitate Order/Agreement (or DNRO form). This is not his living will, it is a special piece of paper that has to be from his doctor. It would be signed by the patient, or his Power of Attorney and the primary doctor that you use for his care. It’s usually a green piece of paper and I posted mother’s in her bathroom door, so I could easily show it to a medic crew. If mother went into the hospital I took it with me in my hospital pack. (You will find my hospital emergency workbook package on the products page of my website www.seniorcarewithspirit.com  it is a beauty and will really help you go step by step through Emergency Room visits.)

If your dad knows he is facing a life transition it is time to call Hospice. That is a terrific service that will come into your home and help you as well as your dad through the process of dying. It is used in the last six months of someones life and is paid for via medicare and all you have to do is ask your doctor or look up Hospice in the phone book. They will come and do an assessment of your dad and then give you an outline of all the things they can do for you. So you can be released from some of the stress and just be his daughter, instead of a care giver.

Remember, older people get weak. But they also recover. So be really clear on what your dad needs to do around the house for you to give care. I told mother she just had to walk, I could not lift her for any length of time. So, she was very good about walking after each of her little strokes and illnesses. She knew I could help her for a few days, but not on a permanent basis, so she responded with lots of exercise to keep her legs working.

Thank you for all you do for your dad, I hope you will go to my website and read about my Care-Givers Workbook 101, it has helped so many family members give top notch care to their seniors. Thanks francy