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 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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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…
- 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
- 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.
- 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?
- 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.
Part Three: Burden of illness often heaviest for caregivers