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.

Dad Does Not Remember Me… Dementia Care

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Dementia, Parkinson’s, Alzheimer’s family care tips by francy Dickinson

George in wheelchair

George watching the Seahawks game in his wheelchair

Dear Francy: I visited my dad last week and he did not remember my name or who I was — I was heartbroken. I don’t think I can make myself go and visit him any more…its so hurtful that he could just forget me. S.

I totally understand the mixed feelings you have inside…it is so hard on everyone involved with the care and love of a senior with dementia or brain disorders.

I want to share something my mother told me when I was care giving for her. She was 100 years old and she had this talk with me after one of her small strokes. She had a series of these strokes and they were always scary but she would rest and perk back up. She wanted to tell me how she felt. “When someone has a newborn baby…the parents and the whole family look for the small changes and growth in the child. When the baby smiles, starts to follow your finger with their eyes, turns over, crawls and walks..the family rejoices in each small step. I am doing that backwards. Each time I have one of the strokes I take a step back. My hands may get weaker, my eyes weaker, I can concentrate shorter periods of time, I walk slower. It’s just small baby retractions…instead of improvements. I am getting worse day by day. Just like babies get better day by day. It is very frightening to me…but I can not change what is happening.” I will always remember her explanation of aging and decline.

Losing abilities and knowing they will not come back is not only frightening for the elder with dementia…but it’s heartbreaking for the close spouse and family members.

To me, its like a small part of the person has left. Leaving means grieving. So in a way, you are starting to grieve the loss of your family member. They may be alive and you maybe sitting next to them…but the part of them that was special and intimate to you has changed…never to return. I have spent many a day grieving and crying over losing parts of my husband, George. One day he is getting up to go and make a cup of tea and the next he is unable to get out of his chair alone, let alone make tea. At first you think, well he will be stronger tomorrow…but tomorrow never comes.

What I have done is allow myself to grieve…to be down and dirty with sadness. I remove myself from my senior and do my tears and anger in another room away from their presence. I often take a walk and clear my mind…and then I return.

When I do return…something has happened. Both of us have changed. I know that George has taken another step backwards and he sees me with a smile on my face and a “begin again” attitude. Because that is what I do. I reset my mind and we begin the day again, with me taking the senior’s small or large change into my care giving routine. I remove my feelings of sadness and I deal with what is in front of me. A person that I love, that is in need of care and I have to give them love in return. Maybe the care is now on a higher level, but the senior is in need of even more of my love and attention.

I know that everyone has a button…yours was your name and your relationship with your dad. I get that…and you should talk about this loss and interact with family and friends over it. You may want to go to your minister, or an older person that has always given you good advice and discuss the loss of your dad’s awareness of you. Call and pay for a professional therapy session, let a professional give you tips on how to work through the bit, by bit…loss of your dad. You may want to start a journal and write down how you feel…and how it has changed how you feel about your own life. Work it out. Because your dad is still here in the world. He is still in need of your love and if the table was turned…he would be sitting there next to you, as you traversed the lonely journey of dementia.

What you do not want to do…is to use your pain and your dad as an excuse to go back to patterns that are unhealthy for your own life. You do not need to use your dad to start to drink, take drugs or harm yourself in any other way. This is not about you…this is about your dad…and your feelings of grief. Its your job work those feeling now, so you can have a healthy emotional life as you go beyond the loss of your dad. Do not ignore the sadness, don’t just shrug your shoulders and think it will not effect your life. You need to be in good health and solid mind to support your mother or other close relatives…so be aware that grief is a personal experience. Everyone goes through the sadness, so sharing it with those that have experienced their own grief and worked through the loss is the way you can stay strong for yourself and your family.

When you have worked on the ideas of who you are without your father’s acknowledgement..then return to his side. Treat him as you would anyone. You start by introducing yourself…”Hi Dad, it’s Stacey– your first and best ever daughter!” And then you sit and slowly talk about your life. Yes, maybe its a wasted visit, because the information will come and go from his mind. But I don’t believe that it’s wasted…I believe and have seen that elders that are visited often, are more responsive and calm during their days. They process their daily life chores in a different way than those that are left on their own and forgotten in the facilities or in their own homes.

I am a deep believer that family and friends are there for life. That means even when someone is unwell…or taking a journey through an incurable cancer, brain or dementia condition…they are there and they are in need of support, love and prayers. You have to work through those inner feelings of rejection and loss…and come out on the other side with the basic love you have always felt for your dad. That love has to now take a new change and express itself with selfless gifting of love and time to your elder…so they can have someone by their side in their journey. No one should be alone at the end of their life..no one…and you will see that you will find the strength to be there with him. You just need to step back and accept the pain, work through your feelings and return to your dad as his cheerleader of life. Together you will support each other in love and even if your visits are quiet…with you reading, sitting next to him….he will feel your love.

Bringing your life and your view of the outside world to your father is the gift you can give. Yes, you will be upset after the visit…but you will go through your own long life ahead with a knowing that you gifted your love to your dad…even on the hardest days of his life. You were there.

I honor your gift of love. Blessings, francy

Would you be kind enough to sign up for the blog on the right of your screen. I am giving George more and more of my time…so this way…you will get my blog sent to you when I have a few minutes to share. Please do send this along to a friend that is going through issues that are similar ~ I would be very grateful.