The Fear of Loss and Pain of Grief

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Facing the loss of your loved one and living through the pain of grief when they are gone…by francy Dickinson

699-happy-new-yearDear Francy:
Most of you know I lost my dear Georgie last year, in November. My holidays were blurry that first month…and so this year is my first holiday without my Georgie and the sadness and feeling of loneliness has been hard for me.

I enjoy hearing from all of you and I have been returning emails and helping anyone in need of a good talk through…but I have not been posting. I am in hopes that I will be able to concentrate and get posting again on a good speed in the new year. Its one of my first of the year goals.

Its my birthday…and New Years Eve and New Years Day used to be a happy time for me. I felt the whole world celebrated my birthday…so I always looked forward to it. In good times…George would always take me out dancing. Parties in cities close and far away. We were in the travel business…so traveling to a wonderful city for New Years was part of the excitement of the holidays. I am so aware of those memories when life was good and times were special with my guy. But what I want to share with you…is the fear and pain that took over when George started suffering from Parkinson’s and Alzheimer’s.

This idea that you give care until someone passes is really not true. The truth is, mental health issues mean that a person changes in personality and in their memory on a daily basis. So way before any end of life issues pop up…you are starting to lose the person you love. Each day their brain changes and in bits and pieces they leave and never return. So in essence you lose your loved one every day. It’s a very hard thing to live with and hard to understand. But you have to be aware its the truth. Doctors, nurses they do not tell you these things…they do not give care like you do. They treat and diagnose — you do the care giving so you feel and see the changes. It could be a forgotten name, or a forgotten word and you watch them try to find another word to use in the conversation. It could be an emotional outburst or a series of days when nothing is said at all…quiet! It could be a strange walking gait, or a repeated action over and over again.

The doctors don’t see it, your family doesn’t see it…YOU see it and FEEL it and it scares the beegeebies out of you! What can you do…how do you make it better? Can you exercise it out…can you calm them down…can you change how you have conversations with them. Can you take the car keys away, can you put alarms on the doors to hear when they just walk out…can you put up signs to help them remember things? Your mind starts to race and you feel. ALONE.

I can not take that feeling away from you. But I can tell you…that you must keep your mind on the goal. That goal is to give your loved one the best “end of life” that you can. It may be a year or ten years ahead…but just take a step at a time and try hard to get support. Write to me, join a support group…ask a few good friends to meet at your place each month so you can express your fears and upsets. YOU need to be strong…because the ride is not pretty and it’s not short.

You also need to have as much help as you can. Trying to be quiet about the struggle will only hurt you and your loved one. Telling family and friends and asking a few of them to be your mind and heart is what is needed. Do you have a friend that is good on the Internet…well ask them to look up the details of problems you are finding and working through. There are wonderful tips out there, but they have to be found so ask that friend to be your eyes on the world.

Do you have a friend that will drive you around? Ask them to take you to the hospital, doctor appointments and therapy treatments. That way you can control your loved one, keep them calm and the driving can be safely done by your friend. You have to ask, you have to say…I NEED HELP. If you don’t you are hurting yourself and your loved one.

The brain of a dementia patient is not going to magically heal…so you simply have to be verbal to people about the situation. I told everyone in the neighborhood. “If you see George walking in front of your house without me next to him. Go out and get him to come in for coffee and call me…please!” Who are you going to impress by being quiet? Let your village know that you have a situation that needs their help…and you will get it back. People want to help…they just don’t know what to do.

I know my loss of George, after his death, has been hard on me. I adored the guy and we were bestest friends and I feel empty. I have to heal and begin to bring new things into my life to feel whole again. I know that…but for me…its been a slow heal. What do I do?

I talk to family and friends about my sadness…I look at pictures of him, I have a little area in my bedroom that has an enlarged picture and candles that I burn each night. It calms me and I feel close to George when I do that…even though he is not there…I feel him there and it comforts me. You need to do the same thing….but in your own way. Find little routines that make you feel safe and start to fill up time in your life. Plan your days, have future events on the calendar and bit by bit…be a part of life around you.

I still pull away from big events. Sometimes in a big family gathering I feel more lonely than in a small one. So I say no…if I feel the event is too much for me. But I force myself to say YES…to events that are smaller with people I know well and love. I am trying to develop a new me and still give myself the honor of the old me that was a part of my duo relationship with George.

Just remember…do not do this alone. Do not think a nurse or doctor has emotional and physical answers to the day by day tasks of your care giving. Do not get upset of friends or family leave you all alone…and rejoice in the friends new and old that will stand by you when you ask for their help. Know that money is not going to grow on trees and you have to stick to a budget because it can be a long, long ride. Know that answers to help you are there…ask me or others that have gone through care giving to help…and be a trooper…ask again and again. Life is meant to live with others not on your own….ask!

I know you can do it…and I honor the fact you are standing there day after day giving someone who is unable to care for their own life…care. You are a good person. No one will give you a thanks…nor will you get a reward for your care. In the mind of your loved one they think they are still…just fine. Nothing has changed…you know better…you know life is now upside-down…yet they think their life is in control. Be brave…force yourself to be honest and talk about the dementia as if it was the flu…let out your voice and keep the honesty of the situation everyday. Hurting feelings is not the point, honesty is the point.

You saw the path to the end of their life was laid out…you stepped up and took their hand and walked next to them.Your loved one is not alone. That makes you a very special and loving person and I am proud to know you. I know you will be honest with them, your friends and yourself and not stand alone. I want you to remember the world does not know you have a problem or you need help…without your voice shouting it out. Be brave and shout and keep shouting till you have a group around you to help you in your journey. No one will say it…but you are loved. Your loved one does love you…even if they can not put that into words…so just hold the honestly of knowing they love you and you are doing the best job you can…each and every day.

Blessings on your New Year…Keep your own health and body strong…life is still there for you after care giving. francy

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Dear Francy Help with Alzheimer’s Medications

by francy Dickinson     www.seniorcarewithspirit.com

Just returned from training for a few days had a great crowd and did a nice class in senior emergency preparation. It’s always enjoyable to train a good group that are active in their minds and bodies even at advanced ages. The word is aging, but trust me – they’re doing it with grace. For all of you that are joining my blog today…thanks for the good time hope you enjoyed all the new information. By the way you will find my Care-Givers Workbook 101 on the products page of my website and it has loads of tips for caring for dementia and Alzheimer seniors.

Dear Francy: My husband does not want to take any medications for his Alzheimer’s. He has good health and he does not want to “feel funny” – I care for him in our home and I am so worried about it all.

Well, bad news for your husband, his Alzheimer’s has impaired his ability to make decisions for his own health and you get to choose if he needs different medications or care.  Your husband’s demeanor is only going to get worse. It will either go into highly frustrated and intense anxiety or it will slow into a non-responsive or retreating mode. Either way, they are not good for him or you.

Now, I know you have been a good kid and gotten a Health Care Directive and Power of Attorney to cover your husband. If not…this is the moment to do it. Go on the net and buy the Borderbund software called Family Law– it’s very inexpensive and it has a step by step program to take you through the legal part of the Health Care Directive. (Or buy a hard copy of the directive at Office Depot) Then go and get it notary stamped at the local bank and then make copies for his doctors so there is not question on who is making the decisions.

Then sit down and write your doctor ( a neurologist) a letter. On the top it will say. Please have doctor read this before our appointment on Thursday and then put into my husband’s file – his name here– Then you begin. You tell the doctor how your husband is acting at home. Is he upset and worrisome, or super quiet and not interacting with you? Just slowly go through a few things that bother you about it and ask the doctor to begin your husband on an emotional drug to keep him calm or keep him engaged in the world and a Alzheimer’s mediation that works for mild Alzheimer conditions. Always remember to ask for generic if he can so you can afford the medication. Then you will fax the letter (go to a Copy Shop for faxing if you need to) and make sure it is sent off and they receive it before your appointment. If you do not have an appointment make one and send the letter to arrive a couple of days head of your appointment.

This means the doctor has time to review your letter and make a review of your husband and his condition and when you arrive you will find him informed and ready to help you. Because this is really about you. You are the care giver, you are your husband’s only life line! Without you, he is not able to do anything. So, you are the important party here. If you are feeling overwhelmed and unable to give him good care, there is a problem. If the overwhelmed is from no medications, that is just not fair to you.

I have to help my husband with his meds twice a day. He would never, and I mean never remember, on his own. I had a day when I was training and then came home tired and he went all day without his meds. Morning and night. I had put them out, but I was not there to remind him. So, by the next day he was acting strange and I checked and was so disappointed in myself for not remembering to check on him. It’s hard for us as care givers. After all – I was tired and stressed with the training class and all that went around it and was gone, then home to be exhausted and losing my voice after training for five hours a day for three days…so, I was in need of a little TLC too!  No one can be perfect, but we can try to do as good a job as possible. The next morning we started again, I gave him his meds and he went forward on his plan. But his body did not, he had a very bad reaction to the meds with diarrhea after the body had gone a day without them. So, this is why meds are so important to take on time and for us, as care givers, to have a plan in place if we get tired or sick.

My husband had a cell phone, so if I am not going to be handy…I set the alarm for his pill time. He is still well enough to remember what the alarm is when it rings. But if he moves out of that stage – and into a deeper problem with memory – I will just call my friend or sister and ask them to call him and remind him and ask him to take the pills while he is on the phone.

George’s Zoloft is so important to his emotional health that it reflects right back on me if he does not take it. So, I always say if George misses the morning pills, that “I have missed my Zoloft” – Even if I personally do not take the meds, they effect my life so negatively if he forgets to take them- it feels like we are one with this medication. Medications for emotional and mental conditions are simply to be prescribed and taken. There is no excuse other than selfish behavior- the reason for so many homeless people is that they have problems taking their meds and it reflects so badly on their abilities they can not function properly without them. Dementia and Alzheimer’s is a combo of emotional and mental conditions that have to be cared for and treated with medications to ease the symptoms.

Often my husband will ask me,” Don’t you think I take too many pills?” He can do this over and over again. So, I have a list of his meds and what they do for him and I just show him the list and ask him which pills he wants to stop taking? – The answer is always, “Well I suppose they’re all OK, you should have shown that to me before.”  (Trust me, I have shown this list to him on numerous occasions, but his memory for things like this is simply non-existent. This having a list handy is really a life saver for me- on the daily repeats that he now endures)

So, to review:

  • Get your legal papers in order so you’re really accepted as the person in charge of decisions for anyone with dementia/Alzheimer’s
  • Explain the changes in your spouses behavior to the doctor in a letter – sent before his appointment. Then you will not have to have an embarrassing confrontation in front of the doctor. This will allow the specialist (neurologist) to make a better choice of medications. Sign the letter with your name and Power of Attorney on the bottom…so he knows you have the ability to make these decisions.
  • Make sure medications are taken on time, everyday…no matter what is happening in your life. Most of these drugs are taken with food, so after breakfast and dinner is better. Ask for generic for your budget and if they are too expensive- tell the doctor to give you a slip that you can fill out and send into the drug company and they will gift you the drug – if you’re on a tight income range.
  • Remember the care giver is just as important as the patient. You are the reason for his health and well being. You are the strength that is going to carry him on for a long time in your own home. If he wants to be in his own home, you get to set the rules and taking meds and keeping him safe is your job. You make the decisions now. That can be hard for people that have had long time marriages and the husband has been the power point of the relationship. But life changes, you now have to stop being the nice girl that listens and follows and become the assertive lady that sets the pace and keeps the care level high.
  • Think of yourself as part of a care team. Your husband, then you, as the care giver, and then the doctor…that’s the triad that is going to make this tough situation of giving care for the long term, to Alzheimer’s spouse – successful in your home.  

I applaud you for your kindness and patience in your care giving. Alzheimer’s takes more than a Seniors mind, it takes the once sweet relationship of husband and wife and turns it on it’s head. It leaves the care giver lonely and feeling alone before the spouse has even died. But you are not alone, you have so many others that are right behind you and you need only ask questions and we will all try to help.

Please go and enjoy the rest of the Alzheimer blogs on my Dear Francy blogs and visit my website www.seniorcarewithspirit.comto get more information. Don’t forget, when you get to the stage that you need  care facility help for your loved one, please contact me and let me help you through that process with our Loving MemoriesSenior Care Facility Placement Service that is FREE for you to use.

Thank you, francy