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

Care-Givers Giving Care on a Budget

Estimated 30 million families from all over are quietly caring for their seniors without funding from anyone. Finding ways to care within a budget of time and money. by francy Dickinson

Family helping family with loving care

Dear Francy; My parents are fighting my mother’s dementia. They are on a very small budget. Dad has Social Security and $250 in a small pension. Mother has only social security, which is half of dad’s. Dad is so afraid of the future. How can he keep giving her the care she needs, with no money for professionals to help him?

First he needs guidance. The best place to find it is through the Aging Department in their local social services. He needs to go with you and just visit the offices and get a case worker to talk to him. She will guide him to what the state can do and what the local agencies can do. You will be surprised at the many people who are trying to help elders with care. Doing this is never negative, it is real and you will have a good idea of the steps that will need to be taken as the time moves on.

Now, here are some ideas of how to help your parents:

  1. If they have a home that is paid in full they can go and get money from the government in a reverse loan. This will give them the house value cash and leave the home for your dad to live in until he is no longer able to do so without a monthly payment.  Yes, some don’t like these loans but they are legal and using a company that you find with good BBB reviews on it, is the ticket. Then your dad would have money for a care giver occasionally. Always ask a professional their advice before you sign the papers, but get someone to come and talk to you about the process. You need to inform yourself as much as you can.
  2. If their home has an extra bedroom, they rent it out. But instead of money, the person will give care-giving time.  This is perfect for a college or technical student. This means you need to set rules for the person using the room. They have to have reference letters or names to check and full list of duties has to be in print for them to sign. Kicking them out will happen if they over-step the agreed upon rules.
  3. This will give your dad a little free time, even a few hours a day. To get out of the house and let him calm down.
  4. He will hire a bath lady. That is a first step in any in-home care. These ladies are trained to be upbeat and caring and will do a bath in no time and have your mom powder fresh and back in her favorite chair with tea in her hand and a smile on her face. To me they are miracle workers.
  5. Next your dad will either get his own circle of friends or re-join one. He needs to go out once a week to have coffee with them, or play poker, or golf or whatever is his pleasure. He will either have a family member, his border, or a paid in home worker watch your mom. This will give your dad a mental release and time to vent to others.
  6. Keeping your dad well with trips to his doctor so his stress does not affect his heart. Keeping him well feed and involved in the family, not feeling alone.
  7. You read and you read about dementia…get your mom into a neurologist so she can get any meds that might help her. Then stop all other doctor visits, its pointless to keep her body healthy when her brain is dying. I know this is hard, but it is what has to be done. Get yourself on a dementia support group online. So you can vent and keep your mind as clear as you can.
  8. Ask your family to cover for your dad…make merry. Keep the visits and the home as upbeat as you can. Play calming music, use smiles and keep your mom in a bubble of safety.
  9. Feed your mother good food, with sugar treats throughout the day. Keeping the energy and sugar level high can help to keep her calm. Don’t be afraid to ask for sleeping pills for her so your dad can get a good sleep, too.
  10. Always ask for help; ask your doctors, your local faith center, your city services, your community center, your senior center, your welfare office. Do not be too proud to get help
Blessings on all that you are doing, I know how hard it is to be one of millions of family members that care for their elders. The amount of seniors tucked away trying to care for loved ones all alone without funding is unbelievable in our country. You simply have to be brave and ask others to guide and help you. You will honor both of your parents by being strong and giving as much as you can and still keeping yourself and your family healthy and safe.
Thank you, for all that you are doing…you are a caring person and if no one has told you lately…. You make a huge difference in this world…your parents are lucky to have you caring for them. Blessings francy
PS Take note that my Senior Care Book is in the editing phase and will be out the door soon…so please click on the right and sign-up and you will be notified of all updated blogs and my book release ….Yeah, I’m excited…it has loads of care giving tips!!

Alzheimer’s/Dementia Need to Keep Moving

Fighting dementia’s anger issues, Parkinson’s body muscle breakdown and Alzheimer’s emotional outbreaks with exercise and small chores by francy Dickinson
 

Friends Enjoying Assisted Care

Dear Francy; My in-laws have gone from the sweetest couple in the world to a home with shouting, anger, and total rejection of home cleaning and upkeep. My husband is beside his self and trying so hard to keep them safe and calm. His mom is in her late 70’s and his dad is 82. Once active they are simply now doing nothing, rarely even prepare food. It’s really tearing my husband up and exhausting him trying to keep the plates twirling in the air both here at home and for their home. What can we do?
 

Well the amount of dual diagnosis for couples is rising, I’m afraid. It’s really tough when you have both parents ill or suffering through side issues of emotions or depression. But lets take a few ideas and throw them around. As you know; the first and best idea is to re-locate them into a retirement situation that includes meals and activities. That would give you and your family so much time and energy saved with your parent’s care. On the down side; it would probably take the value of their home for their life care, so there will probably be no big inheritance in your future. Lots of children of elders think that the carrot at the end of their care-giving stick…is inheriting their parent’s home. (trust me, a lot of kids feel this way) If you can say goodbye to that future income; in exchange for the parents being in a place where their life can be relieved of so much stress and just think about their personal and health issues— it would make a huge change for all of you.

But the reason I write this blog is that ‘most’ families can not do that change. The parents may not want to move, their home may not have equity, their income may not allow them to have assisted or retirement care. So what do families do if this is the case? Lets list a few ideas and see if you can take a few of them to help your current situation.

TAKE THE PRESSURE OF CARE AND REDUCE IT WITH THESE TIPS:

  • Make the rules. If you are going to care for someone on a long-term scale…you get to have a say in the life style and home rules. Get the legal stuff out-of-the-way from the get-go. Get the power of attorney done and signed by both of them. Get their property in joint names and make sure that the dots and dashes are taken care of from day one. I just insist people take care of this issue, even if there is argument and hurt feelings; it’s the way the world is and business is business. Plus, you would never be able to help them in a doctor’s office if you do not have a Power of Attorney for health care signed and notory stamped. Everyone wants this doctors, hospitals, insurance, banks, and the list goes on. Trust me; get this part done.
  • Take time with your own family and set up a calendar for the family and work. See the actual days and times that are free before you try to run over and solve your parent’s problems. If you see that Wednesday is a low family value day…than just make it into a mid-week parent check day. Your husband or you will go over and solve mid-week problems, fix a good meal and spend time with them. Then another in person check can be done on the weekend. Work your own schedule not theirs. If they have a TV show or card club that night…too bad. They will have to tape the show and reschedule the cards; YOUR schedule is current and your own family comes first. That is the rule. Then we move on to care time.
  • Buy a large calendar for the parents to put up on their kitchen wall. I have one with three months at a time. You are in charge of the calendar. You put in the month and dates and keep it updated at the end of each month. It’s a reminder calendar, birthdays, dr appt, at least one activity outside of the home each month, general things that you do around a house each month. This is the hub of what you will be doing and what they can do.
  • You do things that require a ladder and detail work, they do things that are easy to achieve and safe for them to do. You will have to begin to put down the chore list on a small white board…each time you come, you give them things to finish when you are gone. Laundry or folding and putting it away. Or you do the laundry and bring it to them to fold and put away while you are there. It is how well they are functioning that you judge the chores. If you need to do a reminder and call them during the week…then snap a pic of their chore list on your phone..so you can remember what they need to be doing. Keep repeating the chore listing and asking how it is coming, push, push, push…they need to be doing and the confusion of what to do, and who is to do it and how to do it…is giving them stress and thus the arguments. This clearly defined listing of chores is still done, over and over. Do not cave…keep it up, make the chores easier or more complicated depending on their joint abilities.
  • They need to move…so here are some tips. If you have close hands on, turn on the TV for the PBS ‘Sit and Be Fit’ or get DVR’s designed for seniors to move. If they need more supervision then take them to the senior center twice a week. If they can not go out and you are not there to help them…get a student to do it for you. Just like a dog walker; exercise students will come to home and do a 30 minute exercise with them. Seniors always respond to young adults. Visit a gym or college and find students that need to get some experience and hire them for a small amount to keep your parents moving and grooving.
  • Walking? If the two of them can still walk, a walking group is a great way to add both movement and socializing to their life. Make a few calls…get creative and find local resources to help you care for them. Senior resources are available in all communities; more things than you can imagine…but they are there for the taking so find them.
  • ‘Looking forward’ is a big issue with seniors. Get your kinds or your events up on their calendar to share. Let them look forward to grandson’s music concert this month.  Let them look forward to a family birthday, wedding, shower, swim party. Get them involved in the function. Grandma’s favorite salad should be made and Grandpa can help with putting up the decorations or setting up the tables. Use their skills and keep them busy. Just like the Cruise ship social director that keeps everyone busy on the 7 day cruise…you begin to get the feel for it and keep them involved in their family and community.
YES THIS ALL TAKES YOUR TIME; but the key is to keep them busy, active and thinking. It will reduce down the stress and any household that is organized is much richer. It does nothing to just arrive and try to solve an argument. The idea is to keep your parent’s interaction more positive and show them that aging with health and emotional issues is simply a bumpy ride, not the end of their life. Their life needs to be supervised and that should be your role.
You need to be organized too because for a few years, you will have three jobs. Work, your home, their home…that is a lot on your plate. Doing it with joy is very important so ask for help. If you have siblings…they get to step up to the plate. If they are out-of-town, or too busy to help…a financial help is required. Everyone has a limit; but even a monthly Safeway card with $25 or $50 makes a big difference for seniors and their food bill. Walgreen type of drug store gift cards are also perfect for the little things that all seniors in care need.
Family can help; teenagers can do the lawn work, small children can visit and just read or play in front of the grand parents to keep them happy and busy while you work around the house. Aunts can make a weekly slow-cooker dinner that will be eaten for a few meals. Friends can be scheduled to come and visit once a week.
YES…this takes your time, but it’s not impossible to do and once you get a support group going..your time investment goes down.
Communities are adding more and more services. There are free family movie nights, summer free concerts in the park, local food markets, visiting people of interest that do free lectures, heritage communities have celebrations with free events and faith groups have on going senior gatherings. From libraries to local theatres…there are things to do for seniors. It simply takes time to make the investment of knowledge.
I say it over an over again, if you do not have money…you make up for it with creativity. You talk to people you meet about your care for your parents and listen. I have found so many services from others that are involved with community services, charities and community outreach programs. It is amazing how much is available – even in small towns. I hope this information has helped you with your care.
It is a very long road caring for your parents. I want to thank you for giving them the love and care that they deserve. Care giving is a lonely gift, but taking the journey down the path of aging with your parents will be worthwhile in so many ways. I am happy to say that I have a new Alzheimer’s/Dementia guide coming out in just a couple of months…would you click on the sign up over on your right of the screen. It will put you on my email info lisitng and I will let you know so you can get even more ideas with your care giving. Thank you, and blessings on your family…francy