When You Say ‘Enough’ To Giving In Home Care

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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

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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…
  7. 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 
  8. 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.
  9. 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? 
  10. 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.

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Dealing with a Life Crisis n Alzheimer’s Too! HELP!

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How to get through a life crisis and still give care to an Alzheimer’s senior…by francy Dickinson

My Georgie with his great grand daughter, Claire and little Missy

Dear Francy; My mother died 3 months ago and I have a very big problem. My dad has early stages of Alzheimer’s and his emotions and memory loss have blown-up since mother has passed. I am a single mom of three and have no place or money to keep dad and my brother’s wife does not want him in her home. He has his home, paid for and he makes a small income each month, but his life is going down fast and I don’t know how to help him?

Friends are doing a big Auction with lots of items to help us in our move…TY francy
Auction 2 help 

Yes, we have some work to do. First, let’s just have a quick review of the brain for Alzheimer’s from a lay-person. Any person, with any kind of a jolt to their lives is going to have a loss of brain power. If you have a bad fever, a fall, a big argument or a death within your close circle of loved ones – the brain takes a hit. A person that is younger and has full function of their brain, will grow back the brain functions over a short period of time…and although they may feel a little loopy or tired, or experience some feelings of being ‘out of focus’, the repair takes place and the brain will once again function. For a person that is older the brain repair is on ‘slow’, and it will take a few months time to recover all of the brain functions up to par and then move forward. For a person with dementia/Alzheimer’s it really sets them into a ‘swim of things’ and takes a great deal of time for the brain to even  ‘try’ to recover.

Auction 2 help bit.ly/QEY6j0 I experienced this early in the Alzheimer’s process with my husband, George. He had pneumonia and it was not diagnosed. So he went in and out of hospital within a one month time frame losing his body’s ability to fight the infection and finally just having a mental check-out. When they found out his problem and gave him medications he was able to  return home from hospital…it took another six months for his mind/brain to recover. Even after that time, he never came back like he was before the onset of pneumonia…it put a quicker movement into his Alzheimer’s decline and it was such a sad thing to have happen.

It took a long talk with George’s neurologist to get an understanding of what was happening to him. So, you need to know that even on a good day of your dad’s Alzheimer’s he is not functioning like he would…he is grieving both the loss of his wife, life partner and friend. He is in the midst of that and that pressure is going to cause him to express his own thoughts in a confused way.

As always; a trip to his neurologist that specializes in Alzheimer’s care should be done right away. The doctors that give this care specialty are very savvy and will be able to help you understand where your dad stands in his Alzheimer’s progression. He can adjust his medications and help him with diets, exercise and social interaction suggestions for you to follow.

I would suggest that you try to keep him in his own home. He can not be alone and be safe…so my suggestion is that you either hire someone to come in during the day to keep him eating and moving and establishing his own routine again. Or you get someone to come in and live, in the house. This is a very common thing to do in the senior care field. You could find an adult student that needs a place to live and is willing to provide simple services for your dad; in return for free rent and food.

Or you could go into the community and look for another senior that would like to be in the home. I would go to the nearest senior community center or faith facility and ask if they know of a senior that needs a place to live and would be open to giving your dad his meals and making sure he takes his medications and gets to his doctor appointments. To be there for him so he can have six months to a year to move through his grieving and re-establish his life. It is worth your time to find just the right person. That will give you and your dad time to adjust and then face a move into an Adult Family Home.

I like the Adult Family Home…they are usually a house that has a few bedrooms that have other folks with Alzheimer’s in each room. The owner is a trained health care professional and provides a more family type of atmosphere for the patients. This place may be their forever home, or a place to stay for a few years and then transition into a care center that will provide more advanced care.

What I like about the live-in help is way to give you and your brother  time to heal and adjust to the huge change in your family dynamics. You can both stay close to keep an eye on things and still afford his care by exchanging a place for the person to live and eat…in turn for their time giving attention and ‘light’ care to your dad. Usually the house work is left to you or an outside person to do once a month. Then, when your dad has the time to repair from his grief and adjust to his mental loss…it will be time to give him more care and protection with an Adult Family Care Facility.

You can hire daily in-home care that is done by professional services…or you can go the private live-in help, which will give you less trained people. If you do this, you will have to set the rules and outline the chores to be done each day to help your dad.

The professional in-home services have their routines all down on paper. The company comes in and does an assessment and then puts a plan of care together with you. It is a very well run organization, but it is pricey. You can often set your budget and then pick and choose the care services he needs the most. The care that is given from the service is bonded and done according to a pre-agreed on program of care.

The private hiring of an in-home resident can also be very pleasing for all around, if they are interviewed and required to provide a reference and any one younger would have a drug test. That way you can know your dad is safe. The point here is – your dad can no longer live safely on his own. He needs to be cared for and if you can not do it…you will have to get someone to step-in. Keeping your dad in a stable situation is what will allow him to extend his mental abilities as long as possible without a big drop in his functions. If you allow him to just be on his own, and he is unable to remember his medications, eat well or interact or exercise…he will be in a downward spiral that will not be able to be repaired. His mind is not going to heal it will only go downhill…so this is a must..you have to keep him as calm and comforted as you can — as soon as you can…or he will take a dip.

The sale of your father’s home will pay for care in an Adult Family home…so I would keep that in your mind. As you go forward this next year…be sure to make improvements to his home to get it ready to sell in the near future. You can lay out the landscaping so it can be taken care of with bark and a lawn mowing. If your brother goes over a couple times a month to mow the lawn it will look tidy. The inside of the house will need new paint and cleaning and maybe updates to small things to give the house a good sale position on the market. It is best to do a little of this prep work each month…so the expenses can be budgeted during the year. Then when the time comes that your dad is in need of more care, the sale of the house will go easier.

You do need to take over his doctor visits. You need to be in the office with your dad to hear the doctors and understand the medications, food and exercise needed to keep your dad’s brain functioning at its peak performance. That performance will be a slow dip but good care can keep your dad in a bubble of calm and love for a long time.

Once again, if you can not do any care for him…then an Adult Family Home from day one is your goal. But I think with the help of you and your brother, hiring a service or a live-in help would be the best answer. This could keep your dad in his home and allow him to adjust to a new type of life for a year or so…then as he changes his routine’s a move into an Adult Family Home would be easier for him to make and not cause him a total melt down.

I understand the upset that a big change can make to an Alzheimer’s senior. We have to move out of our family home. We have lost it and will need to find a new place to live. I am really trying hard to absorb all the sadness and fuss myself…to keep my husband in a protected bubble. My husband’s Alzheimer’s is moving ahead and I do not want him to go into a severe decline over the move. So, this is a very hard time on me. I am asking friends to help and making plans to keep him calm and protected with a family member during the move. It takes a lot of planning to keep the pressures away from my husband, but in the end…we will be in a new place and he will have his things around him and he will feel safe.

I appreciate all you are doing for your dad…I know how hard it is to make these decisions for your parent. It’s an odd thing to be a child/daughter one day and a comforting care giving daughter the next. You have my appreciation for your love and time that you are giving to your dad. I understand that being a single parent on top of it all…is quite the undertaking…but you can do it! Blessings, francy