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. 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.
How to go about taking a break from care giving for spouses and family…giving the Alzheimer’s senior a safe resting spot and a break from building stress at home. by francy Dickinson
It takes a family to give care to a senior and keep their spouse/care giver rested !
Dear Francy;My dad called and he is giving up on care giving for mom. He has had a cold for two months, is tired, frustrated and just feels she needs more care than he can give. I don’t think its time, yet. Even though her dementia is nutty; she is still able to carry on a conversation, do personal chores when guided and even cooks once a day. How can I get this situation ironed out? I just need to have direction. Thank you, Katy
Katy I get it! I gave myself a mini break today. So I understand the worry and the stress and the need to just throw up your hands and make it go away. Your Dad is the best…how caring he is to give her care in the first place. Here are some ideas to guide you:
ALERT–> TAKING BREAKS FROM FULL TIME CARE GIVING:
Mini breaks; are days that the care giver does very little for the senior. It can be done with a day of giving the senior a chance to see how their skill level really is holding out. Or, it can be that you just do the minimum to keep things going. It’s good to do this once a week, so if the care giver is not feeling well…or is extra tired…there is still a slight break for them. It is a one day routine, not done more than one day in a week. You will go back to full-time care giving the next day after the break. This is a good routine to understand, because there are days the spouse care giver is unwell, tired or injured and they need to only do a minimum of care. You will still bring the senior food and medications and do the basics needed. Then you just spend the day in another room or outside on the porch. You check in on the senior every 20 minutes — but you do not fuss over them.
Today, I gave a day back to George to check on his Alzheimer’s progress. He said he would get up and get his own breakfast of a bagel. He does this about twice a week…all other meals and snacks are given to him by me — on a tray or at the table. What did George do today? He failed his day….he did not get out of bed for food or water. He did not walk or exercise, he only went from the bed to the bathroom and watched TV. I checked on him during the day, asking him to get up and do a walk and get his food…he responded that he would, but never did. I took a break from a day of being pushy and raising my voice and controlling the time frame for his care. At 5:30PM – I came into the bedroom and we chatted about his in-ability to do the tasks for the day. He did not clean up, no tooth brushing, no hair, no nothing. I think it puts the point into my mind, just where he is in his care. He is in need of an attendant at all times. He can not do for his own self any longer. Some times you need to do this test to really see what the senior can do without care. And take note on how much care you actually give to your senior each and every day 24/7. How did I take care of it ? At my 5:30 check-in…I took control back and had him get up, brush his teeth…walk up and down the hall four times and then he came into the kitchen for a light supper and his evening pills. (He had not taken his morning pills, because he did not have his breakfast) We talked about this progress and he was surprised that I was unhappy. He said he could do it if he wanted, he was just tired. I know that is not true…it is just what he is now telling his own mind. But, it showed me that my husband needs me full-time. It is hard to understand that when you give care everyday; all day and all night the care giving starts to creep-up…and you don’t realize the extent of the care needed and the amount of care you give, each and every day…until you step back and take a look.
Mini-out and about breaks. I have breaks from my Georgie, when I go out to grocery shop and then take a coffee-house break before I come home. I take time to quietly garden in the back yard for 1-2 hour breaks. I take an early morning walk with my dogs, break. I leave George in the front room with the big TV and settle-in, I go into our bedroom with a smaller old fashion TV and my computer or Kindle Fire. I take time to read, to listen to Pandora and to write notes to my friends on Twitter and FaceBook. I stay connected to my friends via Internet so I am not isolated.
Taking sleep breaks. When you give care…it’s important to set a daily schedule that is yours not your senior’s time. I set the day and then I can set my own time around it. One of the things I do – is to give George a good lunch, then walk him up and down the hall…give him a bathroom break and then he settles into his chair and naps. I then force myself to lay-down. I may just cuddle with the dogs or listen to music. But I rest, and if I sleep and take a real nap — I applaud myself. I deserve rest and getting it where ever I can, is important for me to do.
I eat differently than George. I am overweight. After many years of care giving and eating poorly, I have now trained myself to eat on my own food program. When I do this I get more energy and I have a plan to my day. I eat protein and low carb. George does not. He eats a full meal with proper nutrition but not low carbs. So that means that I cook two different meals? NO, actually that is not true. I cook a meal with meat and veggies and for George I add a starch and dessert. It is a one meal deal, with two different ways to serve it. If I did not have a weekly meal plan, I would be really overweight. I make a meal plan, I have food prepared for both of us and treats for George. I stick to it and we both stay healthy and within our weight range. Eating well keeps my personal energy up and I do not get drained down.
Supplement are a must! If you think you can do a job like care giving and not take extra vitamins and mineral with supplements –YOU ARE NUTS. I take so many different supplements, but they keep me strong and help me with extra energy. They keep me healthier and they help me get over any bugs that come along the way. How do you start. Make it simple…just add a good quality of multi vitamin and 2,000 units of vitamin C to keep you up and going everyday. Then do some self-study online and find supplements that will fit your personal needs. If you do this your health will stay strong. All to many spouse allow their own health to fail as they give all the love and care to their spouse…foolish. Care givers need to be the pillar of strength that the family revolves around…not fall apart and need to be given care or lose their own health and life after they lose their spouse. I am determined to live through my love for George after he makes the full journey through the end of his life.
Staying on a time plan, means that I can have my own time plan. Once again; giving care to someone is not a throw the senior in front of a TV day plan. You have to decide what each day brings. If you want to be in the yard working…then you take the senior and get them situated int he shade with music and a newspaper. If you want to be on your computer you find movies to tape so they can be on demand for your senior’s viewing. If you want to bake all day…then your senior needs to be a the kitchen table with a newspaper, a project to do or a TV to watch. You bring the senior along with your daily schedule and then you both feel that life moves and changes and you get things done.
Neighbors n friends that come and sit w the senior are gems. I found a couple of senior neighbors that have told me they are fine with coming over for an hour or two and watching TV or playing cards with George. That means I can take a nap, go to the store, meet my sister for a quick-lunch out. If someone says…call me I will help. CALL THEM! It takes a village is not a joke…it does take a lot people do small things to make the care givers life ‘do-able’
Senior Day Care centers, senior centers, faith centers…there are various places that will take seniors for a fee, or for free for a few hours. This is a gem of a service. They understand that spouse care givers need a break…so they make different activities available for the senior. Many of the activities that George likes are usually seasonal. It helps him feel the change the season and enjoy…an egg painting class. A turkey walk or a New Years bird watch….line dancing, chair yoga…the list goes on and on. If you do not search out and find these services you will never know how the change can give your senior a boost and you an escape from the pressure of care.
Rest-time-out. We use the Veterans’ system and they have a yearly service of 30 days of an ‘in-care facility’ available for each veteran with dementia. I can use it one week at a time, all at once, or on a day by day basis at a Alzheimer’s day care center. These rest-pit care services are covered by many of the insurance companies….call them and ask. Ask your primary doctor for any knowledge he has of services in your area. This is a way for me to take a full week off and maybe get out-of-town, or stay with my sister, or simply sleep well without George waking me all night. What a great gift to care givers to have this service available.
IN-HOME CARE…there are so many ways to use in-home care. You can have a family member come each week to visit, you can run an ad in Craigslist or the paper and hire someone (who is trained and has a background check) to come into the home for a few hours each day, you can hire a professional bath lady, or my favorite– is a wonderful in-home care company that will come out and give you a review of what is needed and price quote. If you can not afford the whole package they suggest for you– then pick and choose what services would help you out. These service companies are bonded and licensed so you do not have to worry about their care givers coming into your home. Safety; is never to be under rated for you and your senior.
When the choice to move a senior in to a facility is made…you want to really review the different choices you have in your area. Do not make any facility (no matter how great) a long drive. The family will have a hard time to visit. Now with Alzheimer’s you think a senior will forget and adjust. Trust me; memory is a strange thing…everyone needs to feel loved and attended to…even when they seem to be lost inside their head. A person needs spouse and family love….for a reason to move through their day, live for tomorrow. If you were trapped inside your own mind…would you not want your loved ones to be there and hug you and bring you treats? YES…everyone wants to be loved. So the facility needs to be close to home.
Check it out. Each facility has to be checked by the state department of health. Ask the facility to show you their book. The inspector goes over things and writes it down in a book that is available to the public. You can see if they are clean and have nothing to hide. Then go to the facility in the day and the evening to just walk around and see how the seniors are being treated, fed and if the air smells clean. Ask friends and family for ideas about facilities in the area. Go online and read about the facility and see if you can find reviews. Join the family support group that the facility should provide. This way you get ideas of how to keep giving support and love to your own senior as they go through the down stages of their health.
Get into your mind how the end of the life with your senior will be. Then make it so. What I mean is; If there are things that your spouse has said they want to do…make sure they do them, soon. Don’t put it off. Georgie wanted to visit his parent’s grave site…so I drove up to Seattle to make sure he had that experience and I took a picture of him by the grave stones. He looks a that picture often. I have talked to him about care and what he wants me to do as he needs more care and procedures and how he envisions his memorial.
This is never a fun thing to do for anyone…but once it is said and done…the family can comply and keep the senior happy when the senior gets to a point that they can not express their wants or needs. You, as the spouse, have a lot of decisions to make. So when you have had this chat, you will feel your decisions are not made alone…but are made with the spirit of the senior and their desires on your mind.
Dementia and other extended health fights…mean an elongated journey through grief. It may seem odd to think I am grieving and George is still sitting in the living room. But little bits and pieces of my George die every day. Some times, I just really feel the loss. I will ask your family to understand that grief can be a long ride and to support the care giver if they are going through a hard time. I fight depression and exhaustion on a daily basis…that is what care givers do…they work through the pressures and sadness.
One day I think I am ready to face life without George and then a week later, when I ask him to help me with some small chore and he can no longer give me that help…I will fall apart in sorrow over what seems like a small thing. Spouse or full-time care-givers need to understand this grief. Family, friends or other health care providers…need to take note of the emotional ride that is taken when a person is in a journey to the end of their life.
Your dad is the boss of him…..so if he feels he has nothing left to give to your mom –take that as a sign that he is stressed and totally void of energy. Don’t try to change his mind…take a turn at full-time care and give him a week break to be with other family members and recharge. When he returns; if he still feels the same way, then it is time to add in-home care staff or move your mother to a care facility that is appropriate. I hope the ideas will help you and your dad.
I give you both a hug…for being there for your mother. Care giving is a very hard time of life. I honor anyone who does it for love of family…or as a profession. Blessings on your senior in care…may they open up and see the love that is being given to them. Francy
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