When Your Medical Team Gives Up

When your medical team gives up and you are left alone with your care through a terminal illness or Alzheimer’s. by francy Saunders

Dealing with terminal illness

George walking with Kirbee

George is still healing from the fall he took two weeks ago. The rib cage is feeling better, but it’s still sore and his bruises have turned to a mud-yellow. It was time to check-in with the physical therapist and the nurse practitioner to review his progress and give us guidance.

Alzheimer’s is a very emotional condition and even though we have doctor appointments that does not mean George wants to get up in the morning. His bed is a safe place from the world of confusion. Everyday is a battle to get him up and going without arguments and upsets.

First, I have to make sure he has an up energy. I start with only positive talk and a strong voice tone. I often take a few deep breaths first so I can pump myself up to hand out the energy to him. A special high protein meal has to be served on a day that he’s going out the door. His medications are given to him early so his dementia pills and Zoloft can kick in and keep him calm. Not to mention his bladder pills that help him from nasty runs to the bathroom all day. Once these pills are given and the meal is taken he already begins to feel better. I also talk to him during that meal. I tell him what we are doing, what is happening in the world and our family. I remind him of a special day or event and talk to him as if we are going on adventure; even if it’s just to the doctor’s office.

Once up and out of bed, I have to be next to him to guide him on his daily groom. He no longer showers without me in the bathroom. His Parkinson’s could kick in at any time and take his balance away so I am there to start the shower and get the water at a comfortable degree. I help him into the tub and then he takes over. When the shower is over; I’m there with a hand to help him out and get dry and attend to his personal needs with a reminder for deodorant and moisturizer cream for his legs.

I have already laid out clothes for the day that fit the situation. George gets very cold these days so even in the summer I have to think of light weight but warmth. Then there is the shaving, the whole teeth clean and another reminder for his face moisturizer with SPF for going outside. As he is grooming; I’m cleaning his glasses and talking to him in an up tone with excitement to keep him interested in his day ahead.

All through this process; he pauses and wants to rest or go back to bed. It’s very important for me to keep focused on his progress and keep him on task in a way that is not pushy – but encouraging. I check how he looks and give his eye brows a trim and choose shoes that are good for walking. Then I get him settled in the living room with the TV news so I can do my own personal groom.

The amount of time it takes to get George ready for an outing is really quite staggering. It leaves very little time for me to get ready and often I skip my own breakfast because the time simply falls away. There is my bag to fill with sugar treats if George gets upset and water for his never-ending thirst because of his medications. Then there is his binder with all his medical notes and ID’s to put into my bag. I must have all of the information because we use the Veteran’s for our health care and they need the numbers and names at a moment’s notice. Then its time to pull out the car and get his walker loaded.

His walker is heavy and really hard for me to get into the back seat. George would want to help me with it if he saw me struggling to get it in the car. I always do it ahead of time so he can get in the car and just relax, not be distracted with anything around him.  I have to remember to have the car cool or warm according to the weather or George gets upset and then I need to be prepared with my map if we are going to a medical office that’s unfamiliar. Luckily, we live very close to our Veteran’s health facility at American Lake. It’s just a short drive with no traffic.

I get George out the door and into the car without using his walker so it takes time to guide him and constantly talk to him to keep him motivated and interested in what we are doing. I give him input on what we will do “after” the appointment so he has something fun to think about, not fuss over the upcoming appointment and wait in the office before we see the doctor.

Once at the parking lot by the medical building I try to park as close to the door as possible so its easy for him to walk. The check-in can be quite complicated and I have to make sure he is seated and calm before I go up to the desk. Then I need to be ready with ID and if I have a letter of review for the doctor it is presented to the staff at this time, to be placed into his file. This way the doctor can pre-read the review of care questions or description of his latest challenges that I want him to address during the appointment.

It was our day for physical therapy appointment and our PT is a very nice man who addressed George with respect and walked him slowly to his office. Once there we reviewed George’s fall and his healing progress. The PT tested him for injuries and gave us a few suggestions for exercises.

This was our second appointment this week and I was busy asking questions of the PT about exercises and what areas I should address in the time coming up. As we finished the appointment, the PT told us that he really could do nothing else and it was up to us to do the exercises and address the physical declines that were coming up. My mind is always clicked into using the time I have with the medical professionals for questions and I was busy checking my notes and then we were walking out the door to the car.

I was getting George tucked into the front seat and trying to get the dumb walker back in the car. My mind running ahead at a stop at the store to get some pre-cooked chicken for dinner and asking George if he wanted an ice cream treat on the way home. I was thinking of getting home to the dogs and making a call to his sister about his appointment results. I was thinking of carefully getting the car backed out of the parking area when I was surrounded by disabled patients all backing out of their parking spots at the same time. I was thinking of the co-pay money and wondering if I had enough to get a few extra things at the store. I was thinking of George being left in the car alone when I ran into the store; did he look like he was calm enough to be left on his own? My mind was going a million miles an hour and I was checking my mirror and getting ready to back out of the parking spot.

George reached over and touched my arm. Reaching for my hand he looked at me and I noticed he had tears in his eyes. I stopped the car, pulled back in the parking space and put on the break and looked at him. He held my hand and squeezed and said. “He could do nothing else, that’s what the doctor said the other day. I think it’s just you and me now, Francy. They have given up on me.”

It hit me. I was so busy with my own mind, my own mental to do list, my own thoughts of the day..that I had forgotten the physical therapist’s wording. He did say he could really not do any thing more. George had heard that and taken it in and it had hit him. I had been so busy thinking and he was busy feeling. I had been worried about the full day and all that I had to do ahead of me and he was “in the moment”. I was busy being in charge of our outing and George was quietly absorbing his surroundings.

George had watched the other Veterans that were clearly in medical stress, and judged his own inability to walk well into the building. Feeling that he did not do well with his physical testing and knowing that there was no medication or treatment that was going to change his Alzheimer’s/Parkinson’s condition. He was coming to the conclusion that his medical team had given up.

We cried together. The loneliness of terminal illness is a very personal time. It hits you in different ways at different times. For George and I its a loss of little bits and pieces of his mind and who George has been in his life. It creeps in the door and sits there in silence until we can absorb it and process it. George was right; the medical staff had nothing else they could do for him.  He was in a decline and there was no stopping it. He had a taken a hard fall and was stunned by the pain of his recent injury when he had been such a strong and athletic all his life. Realizing that his body and his mind simply could not be willed to work…was frightening for him.

His medical team is still there. They are polite and helpful but they have no way to make him well again. All we can do is walk this path together and it does become overwhelming at times. We can  just hold on to each other and feel our way through the hurt. George pulled away and looked out his window. He was ready to go home. So I turned the car back on and began to pull out of the parking space…as I backed up George used a very quiet voice; “I’m glad, I’m not alone, Francy…I need you.”

Don’t let your seniors be alone when their medical team gives up. You may not be able to save the day…but you can save the moment. You can call your parent or family member and give them a giggle. You can stop over and give them a hug. You can put your busy day aside and give them a few minutes of your time. Your senior may know inside that their life’s journey is coming to an end; but they should not have to be on that journey without those that they love and have shared friendship with for years. Go and visit them, give them a reminder that love and friendship never end.

Blessings on you…francy

Shut-In: Senior Energy Fruit Shake…YUMM

Energy shake recipe for seniors – easy to make and tastes like a milkshake treat. by Francy Dickinson

Friday Special Treat Day

Shut-In Energy Shake

Totally Yummy Easy Energy Shake

I am going to try to update you with a Friday Recipe treat each week. I like to do easy recipes for those living alone, shut-ins, and those that are on real tight budgets. So, you will have a lot to choose from as the weeks go by.

George is getting more and more into shakes instead of solid foods for all his meals. He likes his in the mid-day. Alzheimer’s and it various medications can take away the feeling of hunger. That means its extra important to keep him filled with good food at the right times of the day. He has lost his taste and smell…they have gone down to almost nothing…so to give him a treat that tastes good is not easy. This shake has worked so well for him.

A good energy shake has protein. Now I like to keep protein drinks around so he can have something to give him a Boost during the day…but you can have a can of protein powder on your shelf too. The powder is less expensive and you want to buy a small box not one of the giant sizes. (we leave those big boxes of protein powder for the body builders) I suggest you get the Vanilla flavor so you can add fruit or chocolate, or even some coffee to flavor it in your shakes.

The good news about this shake is that it is easy to do with the new frozen fruits. I don’t know what they are doing, but this new flash frozen fruit is really adding high quality to the shakes. I get a medley of berries and use a couple for nite time treats…and add a cup of them to this shake and I have plenty for a few shakes. I find them at Walmart or Winco very inexpensive and it means I can serve the shakes all through the year. The frozen fruit adds to the taste and the feeling of an ice milk shake that George adores. This is a winner.

You will see that I add a few little things like 1/2 container of yogurt (flavor of your choice) for its rich taste and good probiotic. Then I top that off with a hit of Metamucil…it will add a little bulk to your drink and you will never know it was there!

My brother-n-law is loosing his teeth and they are very sore. He is fighting cancer and it’s not the time to dedicate to dental work. So his food needs to be soft and easy. This is a perfect shake to give him the feeling of a treat with nothing but good stuff in it.

Yes, you can use sugar…but I think we can all use a little less of that and a sugar substitute is so easy to use and no worry over diabetes. You can just do what you like and make it your own treat. You can make it and divide it into two for two people or give yourself one in the fridge to grab at night when you are tired.

This shake is perfect for your day time cooler that I like you to have by your TV chair, too. You will see that changing eating habits is not as hard as you think. If you cooked for 6 and now there are only 2 of you…or if you have lost your spouse and have to prepare food for just yourself. This type of thing is just the ticket.

As a caregiver…take a look at the protein in this drink. Different protein powders give you different measurements. Your senior really does need that protein to keep alert and muscle strong. So try to work a shake in at least twice a week, if not once a day. Adding a banana and other fruits is great too…but the frozen fruits to make this like a milk shake.

Here is the connection for the recipe and you can print it off easily from my recipe page. You will find a lot of family recipes and Shut-In recipes on my page too.

Click Here to Visit and Print Recipe

Shut-In:/ Easy Senior Energy Shake Recipe

  • You have a choice here choose one:
  •    1 Energy drink like Boost (vanilla flavor) OR
  •    1 cup low-fat milk, 1 scoop vanilla protein powder
  •    Then add to it, in blender:
  •    1/4 cup citrus fruit juice of choice (I use lemon)
  •    1 small pack of Splenda sweetener
  •    1/4 tsp vanilla
  •    1 cup frozen mixed berries (this needs frozen ones)
  •    1/2 container of vanilla yogurt
  •    1 tsp Metamucil (optional but good for you)

Instructions

  1. The beauty of this is in the frozen berries. They are flash freezing fruits so they are sooo good now. I get the packages in the frozen foods at Walmart and I use them in shakes so they give it the feeling of a frosted milk shake instead of just a protein drink. Oh boy, these are yumm.
  2. You can use your own protein drink that is chilled in frig or you can just get some protein powder and a cup of low-fat milk. Put either one of those (your choice) into your blender, or food processor. Add in the 1/4 cup citrus juice that you like and the sweetener with the vanilla. Then the berries or other frozen fruits (always use 1 cup) use 1/2 of a container of yogurt that matches flavors with your drink, I use berry or vanilla. I like to add the Metamucil to make it even better for George. Then hit the button and swirl until it is thick and rich.
  3. Pour it into one of the new large juice cups with lids. I show one in the picture above. These are at all the stores now and have a built-in straw. What I like about them is that you can close the lid and tuck in the straw to sit them on a table or put it in your walker and not worry about it spilling…Its so handy that way. Look for them at the grocery store and get a fun color…I have a red and pink one…George has blue…it makes it easy to spot around the house.
  4. Perfect shake to start your morning, for an afternoon snack or a dinner replacement. Some times you just don’t feel like cooking, but you need your protein and a great tasting treat!
Hope this helps with ideas for senior care givers. Feeding “Elders in Care” is a very hard thing to do. You will find more ideas on my recipe page…OH, this shake has no age limit….we can all enjoy it!
Thanks again for all you do for your senior family
PS//Excited about my new book coming out in September called “Guiding Family Care” I will let you know when it hits Amazon…would you click on the right side of the page and sign up for my site updates and leave me a comment…I love comments…OH and if you liked the read…please hit the LIKE button..thanks!  francy

George took a Fall

Guide for families giving care to seniors

Out this fall by francy 'Guiding Family Care'

George took a fall and I wanted to update you. by francy Dickinson

I am in the middle of designing my front cover for my ‘Guiding Family Care’ eBook for senior in home care-giving. I am going to have it out by September. So the cover has to be done… I was in the middle of the design process and George took a fall.

He had gone downstairs to let the dogs outside and he went out on his own. He was doing things out there, without a cane or walker. He tripped over the hose,  landed on his hands and Cheryl saw him go down and let out a holler. Gosh that is a scary call.

I raced downstairs and the dogs were hovering over him, he was in shock. I had him stay still for a while to see what was injured and he was able to move. Cheryl and I got him to his knees and then to his feet and over through the downstairs door to her sofa. He sat there for a while saying very little and confused. His Alzheimer’s takes such a hit when anything like this happens.

When he got up he was sore and I had him go up the stairs slowly with our help and then the pain started to hit. His ribs had been cracked and his arm and shoulder were bruised. So for the last three days we have had quite the time of it. I am giving him full care; that means transition, grooming, bathroom transition and bringing him meals. He is in less pain in his recliner chair, but unable to move it without help. He has a whistle that he blows when he needs me. It’s just simple things with care giving, but they all add up to time and energy and added stress when the daily routine is blown apart by a fall.

–> I think George blew the whistle less today…so its been four days and the pain is still there, but getting less. He is learning how to adjust to it and walk with his walker again. I took him out the door and across the street – to get the mail and he walked with more speed today. His Parkinson’s tends to make him shuffle, but he was able to pick up his feet in a better walking stance. I can not let him just sit…he has to keep thinking and moving or he will lose his movement memory.

Just another bump in the road that care givers have to adjust to and think about. I thought I would share it all with you, so you can understand the continued stress of being a care giver…at the same time allowing him to heal slowly and get his mind and his muscles strong. So easy to think that falls are the end of an elder’s life. But that is rarely the case; they just make life more difficult…so I am doing my best to motivate him to move safely and heal strong.

My personal frustration is trying to work in-between the whistle blows…but I am getting there. Leave me a comment if you have a similar challenge. OH, a good friend has done an author page for me, if you would be kind enough to visit I would appreciate it. Just click here. When I get the eBook done I will ask you to spread the news for me. It should be out in a couple of weeks, I’m excited and in hopes that George keeps healing so my writing time can increase. Keep your fingers crossed; I want to get this book out the door and into the hands of families that need care giving help on a budget.

Blessings, francy

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