Advanced Alzheimer’s/Dementia Help for Care Givers

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Tips for families caring for advanced Alzheimer’s seniors. by francy Dickinson

When your senior is confused…Tips to help with care giving.

Dear Francy: Mother does not remember me any longer. I can hardly go into her room without crying. That makes her confused and she cries…I want her close to me, I want to care for her…but my heart is broken. 

Living life “in the now” is a very hard thing to do, so here are some tips to help you through this awful time in both of your lives. First, would you do me a favor and just trust me that your mother has not really forgotten you…she remembers in her inner mind and heart that you represent love and caring for her. So you just have to try hard to work with that thought.

Ideas for caring for Elders with Dementia:

  1. If you took a nap and woke up to a world around you that was not familiar to you, can you imagine the fear you would have? That is what is happening to your senior when they wake…or go a few minutes without input…they get caught in a world of no memory. They become frightened, angry, upset, totally overwhelmed with fear–their mind running 24/7 with nerves. You must keep your senior connected to your neurologist. Even if the appointments are only every few months…you want to check in with the memory clinic for help. They may take the senior off the heavy brain drugs because they are no longer working. Usually, the drugs are given in a combination to treat the patient for as long as they get a response. Once off those meds the mind of the senior regresses fast. But we are talking about treating the signs of the regression…the fear, the anger, the upset, the nerves. So you need to keep a running note of your care giving days so the doctor can see where they can prescribe different meds to calm and give the senior an underlining feeling of peace in their mind.
  2. You must accept the “living in the now” concept because this is how the senior is living their day. They wake up to confusion – to a life that is out-of-place and they try to cope. Your job is to help them. No longer address them as mom, dad or auntie…call them by their given name. Remember the farther they regress they may recall a family nickname that they were called as a child. “Sissy, Sonny, Toots, Cutie, Sweetie, Kittens” Families often give young children nicknames and the senior may find comfort in that name once again. Always smile when you talk to them…remember they will react as a child does to a face…if you are angry or upset…they will reflect your emotions…that is what a child or dementia patient does. So force yourself to stay “in the now” and “act” calm and happy…that way your elder will be calm and happy.
  3. Take breaks…overwhelmed with sorrow means you need a break. Ask your neighbor to come over a couple of times a week for two hours and sit with your senior…you can take a walk, go for a ride or do the grocery shopping. Ask a cousin or family member that is older and retired to come and give you a couple of hours a week. Ask your children and grand children to come and visit for a couple of hours each week. Yes, you have to arrange the time…no one looks forward to this task..but they will respond with love “if you ask”. So write down a few names of people who will help you just for a short visit. Then call two or three each week to fill your week with breaks here and there.
  4. Deep breath. You will find when you are upset you hold your breath.I do not know why this happens, but we tend to tense up and hold on to our breathing. So, begin a program of taking in a breath with your nose and holding it a moment and then very slowly let it go. Like a balloon deflating…It will release the tension and the stress on your body as you force yourself to breath. I do it in a series of three as many times as I can during the day…just this simple trick will allow your body to relax.
  5. Smile…remember the rule of smiling through tears. Smiles allow others to read your face as calm and in-charge. When you are in-charge the senior in care will feel relaxed and know you have their back. It may sound silly…but it is so true that I implore you to smile.
  6. Set a repeated pace to the day. It is a proven fact that when children are raised with a structured daily routine they are found to be more emotionally stable. So if your senior is constantly trying to remember who, what and where they are…this underlying feeling of a routine…keeps their inner mind relaxed. Plan the day around you, not your senior. Up at a certain time, eat, do exercise, then rest. Quiet time, TV or radio time and then a nap. Up again to cleaning up time, teeth, face, more walking or exercise in the chair. A puzzle on a table to work,a game of cards, a craft project and then a rest for the afternoon…usually a nap in their chair. At 4PM there is always tea and cookies to keep the blood sugar high for the evening and keep the senior from a “Sundowner crash”. Then TV news to keep their mind thinking and you talking about your day. Rest time…dinner time. Then talk time…right after dinner while you are cleaning up the kitchen you have the senior sit quietly and you talk to them about the day. Who called, whose birthday is coming up…what time of year it is and tell them of your own day. Just use a sing-song voice tone and matter of fact talk through things of the day. The senior may or may not respond. If they do respond – listen to them and go with their mind. If they talk of years past, or a fear, or hover on something fearful. Take note of that and do not go to that part of their brain with your conversation again. Maybe a kidnapping or violent event on the news got them thinking they would be hurt…you just change that around and take note not to mention that again.
  7. Find an in-home nurse practitioner to come and check-in on your senior. There is no reason to constantly worry the senior over the big trip to the doctor. Just keep medications that are palliative or for the seniors comfort. The rest of it can all just drift away and their body can adjust to the natural way of their journey.
  8. TV game shows are very good for dementia. They have excitement in the people –clapping, laughing and the senior will respond with pleasure. Radio shows are very good for seniors. Many elders were raised on radio…they like their own childhood music styles and NPR or local radio stations that feature music of their era are great to have playing in the background to “Ground” the senior’s very busy mind.
  9. Just because they no longer talk…does not mean they no longer think. They have just lost the part of the brain that allows them to speak. So you have to talk to them as though they are speaking. You have to look at them and learn their cues to tell you their needs. Or if you are in the black over their needs…you just say to yourself…”what would I want to be doing right now?” You do as much as you can and then release your own worry. You are doing what your heart is telling you to do…that is all that is needed.
  10. Remember, smile…speak in a strong tone…so the senior can hear your voice. Face the senior and talk so they can see and read your face and don’t be afraid of making mistakes…we all do that every day. Just do your best to care for your senior with love. Then tell yourself…what do I need today? Keeping yourself well fed, exercised and calm is the key to your own health and that will reflect onto your senior in positive ways.

Thank you so for giving your love to your family…you are doing a job that no one else will do. You are loving and caring for your loved one. I so appreciate your time, love and the years that you are gifting to that senior. Taking their hand and helping them down the path of their last days is a very hard thing to do…you are doing fine. I trust your judgement.
Blessings, francy

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You Have Been Diagnosed Now What? Dementia Notes

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How to handle the time when you first get a diagnosis of dementia or another life changing situation..by francy Dickinson

senior walkingDear Francy: My dad just got a diagnosis of dementia and my mom has just found out she has cancer. I know they are both depressed and upset…what should I do now?

First its the shock. No matter what your age or how long you have felt out of sorts…when a doctor looks at you and tells you, your body is not functioning — it is a big change to your life. There will be depression, sadness and worry…there is no getting over that…but how you deal with it all, is the key.

Mental processes have to follow through with it all and talking it out to a few friends, family or a faith adviser is really the best start. Then its time to roll up your sleeves and find out what all this means.

Here is your list:

  1. Actively talk about the diagnosis and let the senior feel the pain, worry and fear. They have to accept and process through it. After that time has passed and they can get out their feelings progress onward. Its always OK to be sad, its just as important to try to end the conversation with an up tone.
  2. To heal, or to live on with tough medical news the mind needs to know what that diagnosis means. No matter if the age is 6 or 86 the person needs to understand the name of the diagnosis and be able to visualize what it is. So, you need to go online and read about it…find out the main points and bring those points down to understandable language. The idea that you can “save” a person from the stress of knowing a serious life condition is long gone…now we face truth and work through it.
  3. Talk about the options that are now on the table. If the doctor has not done this…you can make another appointment for a consultation or go to the net and find the answers yourself. To know the different procedures, medications, surgeries, or other options is something that makes the problem into a “situation to solve” instead of a “dread to face”.
  4. Get a second diagnosis from a professional in the line of specialty- for the problem. A family doctor can tell you there are dementia problems…but a neurologist will tell you more specific details and explain the process of treatment. The family doctor can say you have cancer but a specialist in that type of cancer can give you ideas for treatment and prognosis. This way…you have a firm understanding of what is really wrong. When this is done the mind will be calmer…knowing is very important.
  5. Record doctor appointments on your cell or with a little recorder. Many times we are tired or nervous and we forget what the doctor has said. Tell the doctor you want to share the information with your family and get it down on tape. This way you do not forget or over emotionalize the consultations. Some times the mind will zero in on one word and the rest of the conversation is lost. This recording keeps you clear of mind.
  6. Always ask what this new condition will do to the other things that the senior already is dealing with in their life. If they have a heart problem and now dementia…does that mean medication changes, treatment changes etc. If they are a smoker, drinker, or even on heavy medications, does that mean a different type of treatment for the problems? If they now have cancer does that mean that their special “diabetes diet and drugs” can continue or is there a conflict with the chemical interactions? The specialist will know these things…and you will find support groups online that will share their journey with you so you can make changes. When you understand all these details…your own mind will be calmer.
  7. Understand that the body has to fight the invaders of what ever diagnosis that has been given. So a sincere re-think of diet and supplements has to be made right away. Keep in mind you have to boost the body’s ability to fight the new problem. So new supplements and new ways of eating and exercising will simply boost the ability to fight the invading problems. This step is not in place of medication…it is in addition to medication that will help the body absorb and heal faster. As everyone ages…we all need a boost of help with quicker healing. To ignore this step is many times to hasten the end of life issues.
  8. Talk and talk again. There are lots of things to talk about. There are business things…home, care, money, investments, insurance, and care giving. It will all be needed in the future. So talking about it right now…gets it out in the open and you can seek help from local services of needed. Do not delay in this important part. A person who is extremely ill or under mental/emotional stress does not make choices well. So do it now.
  9. Talking about end of life issues is always hard to do. To make sure a Health Care Directive is agreed on and understood by the family – will mean you can set that hard part aside and deal with the healing and everyday issues. Find out if the person, wants to extend their life, relax and let things take their course, be tube feed, resuscitated, or in the end – cremated. Once again…this is what you do as soon as you can so the ideas are set, papers signed and then it is put aside and you don’t dwell on it.
  10. Is there something an older person wanted to do before they are really unwell? A bucket list type of thing? Maybe they always wanted to visit a family member or see a special place, or return to their home town. Ask the elder what they had hoped to do and make sure you can try to make arrangements for this to happen or something like it. A brother can come to your town…instead of a big trip to his town…or a place can be seen via the web cams instead of a big car trip. But allowing the senior to dot the i’s and cross the t’s of their life, is very important.
  11. Make sure the family knows about the medical conditions. If a child has not spoken to the parent in years…this is the time to write them a letter to let them know the situation. This way they can make a decision to come and visit and let the hurt and years of upset – lay to rest before the senior is no longer with them. You may not care for the family member…but the senior loves each child and each family member and its not for us to judge.
  12. Take pictures of the senior and make video or audios of the senior and their childhood stories and family knowledge. It helps the senior sort through their life choices and leaves you with a remembrance that is very dear. This is a ritual that will really help the senior in their life journey.
  13. Put together what you will know as the dream team of health care. A good specialty doctor that you can talk to, a nurse practitioner that will help with the everyday things, your senior and you and any other person that will give care. Then make a pact that you will all work together to keep the energy and emotional levels up and support each other through the journey.
  14. If end of life issues are being spoken about…call Hospice…do not wait. Too many families wait and do not get all the benefits that Hospice gives. They will come to you and make an evaluation…if they feel it is not time for them…they will put you on hold and check in with you every month. If it is time, they will assist you in ways that really allow you to be with your family member, not only be the 24 hour care giver.
  15. Hurtful family history should be put aside. Thinking about how to make the senior as strong as possible in their mind, heart, and body is the key. Remove guilt and anger. Try very hard to just be in a settled and joy filled mind set each time you visit the senior. Things that happened years ago…are now gone…today has time for joy.
  16. Medic-alert systems are a must if the senior is starting on a downward journey and living alone. These systems will allow you and the senior to be assured that someone will come to their aid in an emergency.
  17. Since both of your parents may need health care…here is advice on how to deal with partners in care together. Click Here for information if your parents can not care for each other.

I hope this list will be of help…I know that all the things on it have happened to me over and over again…and when you tick them off the list…your mind and heart feel free. I thank you for caring for your senior and I wish you well on the journey…francy

What Do You Do When Your Mom Stops Loving You?

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How to handle the anger and pain of emotional discourse between parents and caregivers. by francy Dickinson

Francy w her mom, Toots and dear little Mac

Francy w her mom, Toots and dear little Mac

Dear Francy; This is a review of many folks that write to me…that have had very painful experiences with their parents. It could be their mom or dad…or grandmother. Someone that raised the caregiver and had a solid relationship and then it was broken. The pain is not a small issue…it is felt long and deep.

I suppose it starts with me. My mother and I were very close. I was the ‘late in life’ baby that arrived after mother had raised three other daughters. She was older and going into mid-life issues and I really gave her a run for her money. But over the years, I was her escort, I took her to doctor visits, cared for her and her home…included her in vacations with my husband and really felt I was her friend. When she started having small strokes and could no longer live alone, she moved in with us and lived on the lower floor of our home. Her care was long and hard for me. She was with us for five years…and it was in the last few months of her life she began to talk through her personal history…and the more she talked…day by day…the more she decided I had been the pivot point of her life. She told me she could have gone back to work and made a better life for herself if I had not been born. One day, she spent the whole day telling me how she just never really liked me and it was so hard for her to be in my house. I understood that a woman of almost 100 years was working through things. But when your own parent tells you…they really just never cared for you, as a person…it hurts. I am a fully grown woman and I understand the pain of someone facing death with health issues. I understand the dementia that slowly changes the way an older person sees the world….but it still hurt. I also know that mother loved me…she was a caring person. But loving and liking a person are two different things. I am still working with those words she spoke. In little ways I think…that I did all I could to make her life rich and happy in the end. But I know that inside of me, I was just not the right type of person for her. I was outgoing…she was shy. I was independent and she was a person that needed her family around her. I was not afraid of life…she was cautious. But we never had an argument, or bad words, we would laugh and enjoy our friendship all through my adult life. So, those words…those feelings…they are still with me. Mother died at 100 years after living with us for her last five. She has now been gone since 2006 and yet…I am still mulling over her words.

What do you do…when someone that has been a life-long parent or parent figure decides that you are not the person they need or want in their life? Well its very hard. So I am going to use three examples of family caregivers that have sent me emails about their situations that brought them to a place of feeling deep sadness.

Mary was in her late forties with a great job. She had been divorced for three years and her son had just graduated from college when her father died. She had always been close to her parents and so she really stepped up and traveled to her mother’s side. Those trips to help her mother increased and within a year…Mary sold her small home, left her job, friends and son and moved two states away to be close to her mother. Mary found a small apartment, she got a lesser job and she began the three-year care giving of her mother. Her mother was suffering with kidney problems and they became very serious. Mary tried to keep her mom busy with things that brought her joy. They would shop, go to activities, do a bit of travel and gardening together. Mary would constantly think of how to help her mom over the pain of her health issues. Mary quit her job and moved in with her mother in the last year of her life. Mary was her mother’s sole caregiver. She tried to make each day include something happy to talk about and give her mom food she enjoyed and was constantly arranging friends and family to come and visit. As an only child, Mary was really shocked that on the death of her mother…everything that her mother owned, family pieces, property, money and personal items…were all left to the Humane Society. (Who promptly arrived on the door step two days after the funeral to ask Mary to be out of the house within 48 hours.) Mary has moved back to be by her friends and son, who is now married. She started her own business and is busy, busy, busy. But, she still harbors the pain of her mother rejecting her after her death. Never telling her that she was not going to receive things that belonged to her dad and her family history items. She has no idea why her mother made those decisions…but the pain of them haunt Mary. Mary and I have talked about it many times…she has gone on with her life, she is happy and comfortable…but she is wounded.

Roger lost his mother when he was 10 and his dad did his best raising he and his brother. His dad was a professional man and spent very little time around the boys…but hired care givers. As Roger went through life, graduating from college, marriage and success with wonderful children of his own and a great business career…his dad often told him how proud of him he was so Roger always felt loved. It was when his dad had aged and lived alone a long time.. that things started to crack. His dad told Roger that his brother had been helping him more than Roger and he was disappointed in him. He would call and tell him that the brother was there when he fell or went into the hospital. Roger was really upset. He called his dad every other day. He lived about an hour’s drive away and would come if his dad needed him. But his dad never told Roger of his health issues or of any need…even when Roger asked and came over to check on him. Suddenly…it was like his dad was using Roger and his brother as bouncing balls. His brother always coming out ahead. This tension went on for five years…constant worry over his dad and his dad’s care…upsets between he and his brother…upset with what his dad wanted and needed. Then when his dad had his final heart attack and Roger raced to the hospital…his dad had put his name down as “blocked from visits”. When his dad died…he was even asked not to come to the memorial. Roger, a man with a family, grand children, money and friendly disposition…is suddenly out of favor. His own father rejecting him from his life and death. Roger has talked to me about this for many years…those actions of his dad…have caused Roger so much heart ache and feelings of failure.

Anne was the 8th child and the beloved baby of her family. They were all close and caring people and often gathered together in their parents large home for holidays. Family gatherings were filled with jokes, laughs and love. Stories of the family history, grandchildren running around and simple joy of being together. So when her mother died…it was not only hard to be without her…but the family gatherings stopped. No one really stepped up to take them over…the family slipped apart. Soon her dad was alone in a large house and none of the other siblings, but Anne, were coming to visit or give him care. No matter how often Anne would talk to the family members…they were busy and had their own lives. So she and her dad just forged ahead. At first Anne tried to keep the house and garden up like her mother did. But Anne had her own family and she simply could not do two homes. As the house became overwhelming…her dad started to get quiet and sad. Finally, his health was not good enough for him to be alone…so Anne and her husband had him come and live with them. Her dad sold his house and remodeled a garage at Anne’s place so he could have a place of his own, but be close. Then Anne began the high pressure care giving of someone with health issues and the running back and forth to deliver food and care from her house to the back garden cottage. Anne had three boys who had spent their life adoring their grandfather but now he wanted quiet and was always complaining about them. Her husband would go over and watch TV with her dad and then the complaining began that he did not have privacy. A lifetime of a quiet, loving dad had started to turn into a man who was mad and his own anger was directed at Anne. The rest of his kids rarely came to visit…no matter how much Anne tried to get them to come…so the dad felt it was Anne keeping them away. The situation was not just hard, but hurtful and three days before her dad passed…he had called a retirement center and told him he was being abused and needed to move in with them. Anne was too busy to think about the sadness when her dad passed…but now that her own kids are grown and out of the house she has more time. Anne cut ties to her siblings…she just could not deal with the thoughts that people she loved were not there for her when she needed them. She has worked through the anger over what her dad had done…at the end of his life…but the reporting abuse has left her feeling such pain. She still does not understand why her dad would say things so hurtful about her.

So, that is the review of issues between parents and their children…who have grown into adults and gave their love back to their parents. What to do? How to heal? I have talked this over with so many family members that I know that just saying it meant nothing…the hurtful words, actions or times…are just forgotten. But the hurt does not go away. You can tell yourself that an older person has fear of dying issues…but hurtful words and deeds take their toll.

What most of us have decided is that talking about our pain helps…even if we have to repeat the story a few times with a few different people…it helps hearing it in your mind and through your ears. Making a personal pledge that we will not do anything like this to our own family caregivers when the time has come is also helpful. But the most we can do…is to simply put the experience down as a sad life story…and try to move on through our lives.

Care giving is a gift…and just like any other gift…it can be accepted with grace and a thank you…or it can be taken and put aside and not appreciated. When you take a step back you see the bigger picture..but you can not step back far enough not to wonder why…the one person you loved and tried to help…took advantage of you. Just know you are not alone…and your own moral compass gave you the ability to help and love your family member at a time in their life when they needed to have someone to help them. That knowledge means you tried your best…and nothing more needs to be said. Even thou your mind and heart will never forget the slight from someone so loved by you.

I want to once again, thank you for all you have done and or are doing for your senior in care. They need you, even if the journey is not pleasant…they need your love. Blessings, francy

Summer Garden Squash Lasagna for Seniors

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Seniors love their gardens.Here is how to use your early zucchini and summer squash
for a delightful Italian meal for your senior. by francy Dickinson

Dear Francy; Mom is so sad that she no longer has her garden…she talks about it all the time. I just wish I could gift her a day in the dirt…any ideas for a gal stuck in a wheelchair?

George enjoying his tomatoes on the front porch

George enjoying his tomatoes on the front porch

Yes….get her out the door on your front or back porch and put some veggies in a container. Even if it’s just some herbs…she will feel a part of it again if you hand her the hose and let her water each morning or evening. Here is a fun recipe from our garden…George loves to sit on the porch and watch his garden grow and so when we cut our first squash today — we had to bring it in and make it into a meal!

What I love about cooking these days is I cook for four or six…then I freeze a couple of the left overs as meal size portions. When I have a day that is stress filled and I’m tired. I am able to go and get one of the home-made dinners and George can enjoy the moment all over again. I served this meal with a French roll. I find buying a couple of French rolls is so much easier than trying to finish off a big loaf of French bread. I know both you and your senior will enjoy this meal…its fun to use your own (or local) summer squash and this is a hit with George.

Summer Squash & Zucchini Lasagna

Our first summer squash and zucchini from our container garden

Our first summer squash and zucchini from our container garden

1 med summer squash and 1 med zucchini( chopped)
1/4 pound hamburger (room temp)
1/2 medium sweet onion (chopped)
1 tsp of house seasoning
1tsp Italian seasoning
1 tsp fennel
1 can chopped Italian- stewed tomatoes
1  small can or 1 cup of tomato sauce

Turn the oven on to 350 and get a 9 x13 pan greased and sitting aside.

Layering the veggies with cheese

Layering the veggies with cheese

Start the hamburger browning on medium, on the stove. Break it apart so it is in small pieces as it cooks. Add the seasoning combo of salt, pepper and garlic..then when it’s brown…mix in the small chopped onion pieces and the fennel. Let it all brown together. (drain off the excess oil) Add in the squash pieces – that are cut in inch cube size – and the can of stewed tomatoes. Stir for two minutes to bring the flavor of the mix together than take off the burner and let set while you make the cheese layer.
Cheese Layer: 1 Small carton of small curd cottage cheese – 1 beaten egg – a few fresh  leaves of basil cut with scissors into small strips- a large sprig of parsley from your container, cut with scissors. 1/4 cup of Parmesan cheese. Mix all of this together and add pepper and salt.
Layer 1/2 the veggie and meat mixture in the greased pan. Top that with the cheese layer dotted all over the first layer and then spread out. Layer the rest of the veggie and meat mixture and top it with the 1 cup of tomato sauce (or canned spaghetti sauce) and sprinkle that with the Italian Seasoning.
Top it with shredded mozzarella cheese and if you have some shredded fresh Parmesan you can mix that in with the other cheese. Sit the pan in a baking pan to prevent dripping (the squash really adds moisture to this dish, so you do not want to have it dripping in the oven as it bakes.) Bake for 45 minutes on 350 –watching the cheese so it browns but does not burn. Take it out and let it set for about 5-10 minutes so it will cool and set so it is easier to serve.
Italian casseroleI take the French roll – butter it and sprinkle with garlic, Parmesan cheese and Johnny’s Seasoning…and wrap in foil…put in the last 10 minutes so it can be warm and toasty…YUMM.

I usually serve George at his chair in the living room. I have a good tray that I use and I always line it with a towel or napkin and make it look as nice as I can. Eating when you are a senior..is a hard chore…many times seniors lose their ability to taste…so this is a great Italian seasoning meal that is tasty and fun for the senior to eat. Since it’s made of veggies I do not make a side salad..and because its quite rich…I let George eat…rest and then have his coffee with a couple of cookies later. I always put his pills, on the tray…so he can see them and remember to take them after the meal.

I like to give George a nice tray to encourage him to eat the meal

I like to give George a nice tray to encourage him to eat the meal

Italian is a fun way to mix up dinners for seniors that get so tired of everyday meals. Plus the use of the veggies that they helped raise…with their daily watering…and love…makes the dinner even better.

I understand that as the senior advances in his medical complications…eating spicy foods can be hard on the stomach. I did not use many spices in this and you could always leave out the garlic completely. Just work around it and then remember the dinner is fresh and the left overs are perfect frozen dinners for next week.

I always want to thank you for your loving gift of time and attention to your senior. Care giving is a very lonely way of life. So when you and your senior can share a little chore of watering a small container garden…and then enjoy the taste — it gives your daily life a boost…Blessings, francy

Routine gives Alzheimer’s n Elders Good Home Care

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George’s Routine -Daily exercise with me ;O

Ideas to give Elders and Dementia/Alzheimer’s seniors good care with routines..by francy Dickinson

Dear Francy; Dad moved in two months ago and stays in bed all day. What can I do to get him up and out? 

Good Care Secret? ROUTINE

Many people lose their routines when they retire or suffer a loss of a spouse or a health change. It is a normal for them to react…they just cope. So, if you are unable to get them professional care…then YOU have to be the care giver with the mostest….and that means YOU return the senior to ‘a routine’. You might remember back to when you were raising or helping others raise their children…children respond to life so much stronger with a routine in place….well…this is just like that…the more you pre-program the day with activities that are repeated…the more secure the senior feels and the more they respond in kind.

I say this with love…because it means that YOUR own life is changed…you, have to live for another and it is very challenging…trust me — I live it. But here are the rules:

RULES FOR DAILY ROUTINE:

  1. You will do the routine for two days and then take a break. So we have two days on and one day off. That off day means you can sleep in or do your own morning routine. 
  2. You will have an up attitude, even when you are down, sick or tired. That is what it means when you ‘give care’ You are giving not taking.
  3. You will think through a routine and write it down and then make it your own.

FRANCY’S ROUTINE WITH GEORGE:

George hates to get up in the morning. So I do not pressure that…I allow him to rest. He has Alzheimer’s and Parkinson’s so there are loads of issues for him. But what to remember is that everyday…is a new day in his mind…so it has to be a new day in my mind too.

I bring him breakfast and tell him that he has to get up in 1/2 hour and then I take note of the time. I either rest, or go and get things done in the house while he is eating and then return at the set time for him to get up. I make sure he has taken his meds then I get him up and bring him into the bathroom. Usually, he has already gone to the toilet…so I begin with him sitting on his bath bench facing out into the bathroom – or facing me standing right next to him. It is a good height and easy for him to get up and down from this sitting position.

I start him by asking him to remove his upper clothes and as he does that I go and get his clean clothes for the day. I always put out an under shirt and a thermo-shirt and then a flannel shirt or nice sweat shirt (sometimes with an added vest.) <Why so much? Seniors often have a problem with feeling cold and to keep the house temp in order…I layer his clothing>

Once he is undressed on top: I then get warm water and give him a wash cloth and he does his personal wash up, then deodorant  Twice a week we do a bath; the other days it is this procedure instead. <Many elders become worried about water and a bath is hard to get them to do…so this is a short clean, if the problem with the bath continues, then hire a bath person to come once a week and you do the clean up ea day in-between>

Then I help him dress with his undershirt, his thermo-shirt and have him stay seated.(I do not add the rest of the tops until he is done with all of his clean up and ready to exit the bathroom) Still in his sitting position: I then have him do his leg exercises that keep his calves strong. <This exercise keeps the falling down to a min. The calves are the point that helps us stay up and balanced> He will sit and lift one leg out straight and then do flex and point of his foot for a 20 count. Keeping the leg out and straight the whole time. Then we change to the other leg. I do the flex and point with a slow (one-and two- and three…so the point is on the number and the flex is on the and count– up to 20) You can do this a round of one or two…depending on how strong the legs are and if they have fallen within the last month. If so, repeat the 20 count routine on both sides.

He stays in a sitting position and we take off his socks. I let him do it and he bends down and then takes off his pajamas and his Depends…he then cleans up with a fresh wash cloth, just like we did with his torso and then sits back down. I make sure his feet are done and I help him with this so he can be steady. I then apply a moisturizer for his legs and feet and he has to rub it in. It will require him to bend over; so I stay close and hold his shoulders so he does not fall while he rubs in the moisturizer all over his lower leg & feet. If there is fungus on his toes we do the drops at this time. The skin there gets very flaky and we want it healthy, clean and moist. <This is when you notice if there are any sore spots or red spots. If so you talk to the doctor right away by phone and get guidance  Any sores on legs or feet are serious and hard to heal…get help —fast>

I then (while in a sitting position) have him put on his new Depends to the knees and add his sweatpants to his knees and then he stands and we pull them up. He sits down and we add his socks and slippers. He then gets up and goes to the sink and I have him do his shaving on his own. Then I remind him of his mouthwash, his floss and then he sits back down to do his Sonicare. Now you may or may not have a Sonicare…but I feel they have saved our teeth. They are an investment, but they do such a good job when you are unable to move your arms well to do your teeth. <Obviously if using false teeth you would have them soaking while you did the body clean and rinse and put the teeth in fresh and ready to go. You never brush false teeth they are made of material that is to be cleaned with a Polident-type of soaking once a day to keep the mouth fresh and you would  have your senior rinse their mouth with mouthwash before the teeth are put in again.>

Now he is back standing at the sink:  I have him use a wash cloth and get it very warm water and let George go over his face. Then I use a sugar scrub…it is designed for the face. Or you can use a cleanser for the face with beads in it to remove the dead skin on the face and leave it looking fresh and healthy. George moves and scrubs the scub all over his face up into his brow and hairline and his eye brows. Then he takes the hot wet wash cloth and cleans it off the scrub…rinsing and cleaning until the scrub is gone. Then he puts on Oil of Olay. <Any moisturizer is good, this one is easy for a guy to use and It is designed as a nice face moisturizer and it goes all over the skin of the face and ears and chin. it has SPF in it so the sun will be kept away from delicate facial skin and ears.  Now he is clean and ready to leave the bathroom.

I remove all his clothing that has to be washed and put it in the closet in a large clothes hamper and do a load twice a week of his clothes alone. < It is “SO-OOO” important to keep the bathroom and clothes clean, the bed linens and towels clean too! The ability to have bed sores and infections in small cuts and scraps are very high – when a person is older and their body is not as healthy as it used to be. Clean everything…be a freak…or hire it done. Its your choice.>

George then goes out to the living room. Where I have a straight back chair. I put a small pillow on the chair for his comfort and he sits down. From here he does his exercises. He will first do a stand – squat – stand and slowly sit. This is an exercise that allows his thighs and bum to learn how to sit and stand from a chair, again. I use the term stand as (solider with his straight arms down to his side – I say squat and he does and I move my arms to the front so he remembers that he has to balance his body with his arms. Then I say solider again and he goes into the straight standing position with his arms straight down to his side and then I use my voice “Slowly down” for him to sit in a slow motion….then it is repeated for at least 10 times. If we do this 4 times a week…his body responds well…if we do it less…he forgets the routine and his muscles get weak again. That is when he begins to fall and it goes down from there…

I have learned that his routine is really ‘my routine’ and the more we are able to stick to it..the better his body and muscles respond.  

From there I do arm exercises and I will do a little video for you to use if you like. I will add it in to this blog when I get it done.

After we are through I help him back into his chair and have him do 3 really deep breaths to load up his brain with oxygen. Breathing-in with the nose and out with the mouth. The is the beginning of his day…from here he rests and we do what ever our day holds. But I do this as often as I can. YES…it is a pain — NO he is not always nice to me while we do it — YES I have to push him each time — NO he does not remember the exercises or the toilet routine —YES it does make a difference in the quality of his day forward.

It’s a routine that takes about 1 hour and 30 minutes because he is slow. But it sets the tone for a full day of healthy, happier emotions and the attention makes him feel wanted and I always give him a full cheer-leading routine as he is going through is paces.

I know you can do it. It would be done like this at a professional care facility…so I think doing it at home makes the ability of the senior to stay in good health and strong all the longer. I feel that Alzheimer’s is going to take over George…but we can hold it off by keeping him fit and clean and happy in his day

Blessings on all that you do each day for your senior. Francy

Dementia – Alzheimer’s Spouses Care Tips

Ideas to keep the spouse of dementia and Alzheimer’s seniors strong throughout giving care…by francy Saunders

Alzheimer's spouse keeping calm

George enjoying the dogs n keeping calm

Dear Francy; My husband took the car out last night and ran it into the neighber’s rockery. I was making dinner. I left him sitting in front of the TV shouting at a baseball game. Then crash! I feel like my insides are gone…my head is empty, my heart is not even in my body anymore. What do I do?

You keep going on. You keep making dinner and knowing that you are doing what you can with dementia. You tell him it was OK and you bring him in the door and give him sugar to calm him down. You keep his name on the car insurance even though he has not driven in a few years. You get the car fixed or use “Hello Kitty” duck tape to fix it yourself. You are a strong, Pioneer Woman and you can do it!

This letter hit my heart, because I have experienced so many of her feelings. Let’s face it…this is our life. No one else understands but us…we do not come from our house and go somewhere else to rest at the end of the day. 24/7 is no joke for us…it is what we live 365 days a year. I am talking to you, not to the daughter or son or dear friends that help us give care. I am talking to the wife or husband that is the full time care giver, plus the lover of the one that has dementia. YOU and I are the ones on the front line…we understand each other.

Here are some tips to help you cope with your non-stop care giving:

  • Never believe that your spouse will stay. Think toddler; they would never be left in a danger spot, you know they will not stay. So use that thought pattern when you are trying to keep your senior safe.
  • Never believe that your spouse will take or eat anything you give them. They may even hide it. Keep a check on what you give to them, so you know where they are in protein and sugar. Give up  healthy food ideas…feed them what they will eat and try to slide in a high mineral and vitamin each day with their other meds. Do healthy eating on the sly…if you can make veggies look fun…or serve them with a dip…do it. Just know, intake of food is the goal…adding a supplement drink is great…but will they drink it?
  • Hide those keys to the car. Just like you would do if you had a teen in the house that was always asking for the car. Tuck your keys away in a special place that only you know and do it repeatedly. Take the second set of keys and put those in your office, far away from the main house.
  • Treat your mate like a toddler when it comes to going out the door. Tell them ice cream, donuts or coffee shop is there treat — if they just stay calm and follow you around while you are out of the house.
  • Get new clothes for the senior to wear around the house. The old complicated pants with belts, shoes that tie, tops that button…were yesterday clothes. Now, give them easy to slip on pants, shirts, sweat shirts, and pajamas. You can still buy style; just color and style that is easy on and off.
  • Shoes have to be strong. Get them comfort shoes to walk in and easy to take on and off. No shuffling scuffs…slippers have to have a good sole and support their feet. Falls will not only happen, but will be part of the senior’s life. Make their walking as safe as possible. Get the old shoes out the door, so their is no argument about what to wear. NO flip-flops, or sandels, the foot has to be supported.
  • Order a full TV schedule. Even if you and your spouse have not been TV people. Get the full cable range. You will never know what the senior will want to watch and something on the big TV channel list will hit them and they will ‘fall into’ the program. Old shows that used to have a plot or jump around in content will no longer interest your senior. They will want to watch history, or food channel, or military, or old movies. Don’t argue, just do it. TV is a way to keep their mind moving and occupied…you can not possibly be the full center of attention for an Alzheimer brain. Cable is an investment in the life of you both.
  • Make and keep a full range of doctor appointments. Even though the mind is effected in dementia…their body supports the brain. Keeping the senior well will eliminate the senior’s worry over things. They can get focused on skin sores…so have a skin doctor check each year. They will have problems with their bladder, so get a urologist to keep them on point with meds to help with function. They will have stress, so make sure your neurologist gives them a calming medication. Overall health may seem not important when the senior is going nutty day by day…but you having to care for their body functions or problems on top of mental health…is huge!
  • Make bath day twice a week. Water becomes difficult for dementia seniors. Get them a bath chair or bench, put on a hand held shower head and hire a bath lady as soon as you can. Even if they only come once and teach you how to bath a senior fast. This is a big deal with a senior. They have to keep clean, their skin needs attention and their hair needs to be tidy. Learning how to bath them is important. Do not put this off; even if they are in easy stage of dementia – add the bath chair or bench and hand held soon…so they move into the use of it while they are able.
  • Change your home; there needs to be a safe room…that means that your family room or living room…needs to tidy up. The dementia mind, needs less stress around it. So remove clutter, remove all the family pictures on the walls…keep it clean so the brain can see order. Take away the foot stool and get a Lazyboy so the spouse can easily get in and out of their favorite chair. Move the TV so watching it is easy and will also give them a view out the window. Many times the mind of a dementia senior will wander out to look at trees for hours.
  • Get your bedroom ready for change. Getting in and out of bed has to be easy. OR….OR, YOU will be getting up every time your spouse needs to go to the bathroom – all nite long! So you may have to raise up your bed so the senior can just sit up, turn and step out of bed…not stand up from the bed. Get new pillows that are strong and will wrap your spouse for the night. That will give a feeling of safety.
  • Give up the fight. Even thou rules will be broken over and over again. There is no fighting Alzheimer’s anger…you just have to let it flow and then stand your ground. YOU are the one that sets the rules of the house now. NO ONE can break the rules; so there is a lot of being the MEAN SPOUSE, but that is not going to change the fact that you set rules and enforce them for the safety of you and your spouse.
  • Eat on time, take drugs on time, take rest on time, take exercise on time….setting a routine. Routines are golden for toddlers and platinum for seniors with dementia. When they are on a daily pattern, they will be calmer inside their mind and that means you are able to relax more. It is not easy to have daily patterns…but you can and will set the routine and stay on it…I know you can do it.
  • Tell yourself to take a walk outside, around the house or block. A drive to the store on your own for a shopping trip…will give you a re-boot. You need it. If you have to get a sitter for your spouse…then ask a friend, a family member, a neighbor to come over twice a week for at least 90min and go out the door. Even if you just drive to a park and sit in the car in silence…and breathe.

That is it for this time….I will try to get back to a few more tips as we move along….I always thank you and bless you for all you are doing for your spouse. This is not a fun trip…how many times I want to ‘drive to Hawaii’–but I am here, day after day. I know you are there with your spouse too. Together we can make this journey with our loved one.

I know how strong you are….you are like a rock. Rocks cry….rocks crack, but rocks stay in place throughout time. You can do this, you are doing this…and I thank you for all you do that no one but you…knows you do. Its personal and private, but it also has to be shared. Share…stay well..francy

Answers for a Depressed Spouse Care-Giver

Ideas to help those feeling low and helpless with depression over giving care to their spouse 24/7. by francy Dickinson

Family friend, Kathy, giving me a break and caring for mom

Dear Francy; My wife is in late stages of Parkinson’s. She now sleeps a lot and her speech is very impaired. I can not really understand her or what she wants from me. Her ability to be mobile is gone and I have to stay by her side when she moves. She does not eat anything but cookies and drinks only soda pop. The house is a mess, I am tired and mad most days. I know you help others with ideas, but what can you do for me…I’m just angry.

Anger, yes…who would not be angry when the person you have given your heart to for so many years…suddenly needs you the most, but you are unable to really help?

You just have to trust me this frustration and anger is called depression. If you have never had anymore than a few blue days in your life…depression may seem a fussy word for you. But you described just the situation that brings a person down.

See if this fits?

  1. You try so hard to care for your spouse that you actually can ‘feel’ their needs. You know when they need to go to the toilet, eat, or what they say when they mumble. You try to think ahead to things that will keep them calm. This is very what mothers do with small infants; the ability to talk, does not mean there is no way to interact with another person.
    But/ if you go to the bathroom yourself, take a step out of a room or just fall asleep in your chair you miss the clue. You then feel like you have let them down. They’re in need, they have fallen, they have had an accident, they are crying from frustration…it feels like your fault.
  2. You find that you are sleeping at the top of your sleep…any small noise wakes you up and you feel you have to go and check your spouse. This light sleep makes you feel out of sorts all day.
    Result/ you get very little sleep at all and almost no deep rejuvenating sleep. Therefore, you are just running on fumes most days and your frustration turns to anger towards yourself.
  3. You try to  think of things to feed your spouse. As they lose their sense of taste they turn to sweet or sour foods. They eat less, so they are not hungry. They forget how to swallow well and you have to be right by them at all times to keep them from choking. They need water for flushing their pills and the toxins in their body, but they will not drink water. You try but they resist every road you go down.
    Result/ you don’t eat well yourself. You do not want to make a dinner for one, it feels like to much trouble so you grab easy choices to eat. Toast, sandwich, cookies, chips and other easy to eat food. They simply give you sugar highs and lows, upset stomach, weight gain or loss and you counter with more and more caffeine to keep you going.
  4. You need to be there to move your spouse from point A to point B. Too unsteady to walk on their own, that means you have to jump up each time your spouse needs to move.
    Result/you have no time to your own self. You get pulled away from doing the washing, making beds, cleaning the house. You can not take time to walk out the door even to retrieve something from the garage. You feel almost trapped in the room with your spouse and your world gets smaller and smaller.
  5. People tell you to get out and about. But preparing your spouse is so time-consuming. You have to clean them up, get them dressed, struggle with the upset they have on any change of pace to their day. Then you have to get yourself clean, dressed and ready to go.
    Result/ you forget your grocery store list, you lose your keys, you are late for doctor appointments or if you do go out to eat…the process is so upsetting, you simply find staying at home is safe and easier. Plus; one trip out the door, means 2-3 days of bed rest for your spouse and more work for yourself.
  6. TV becomes the focus of the household. It will calm your spouse and give you that ‘white-noise’ in the background to rest your mind.
    Result/ you nod off during the shows and that reduces your night-sleeping ability. You sit in a chair and do not get real exercise so when you jump up to help your spouse you find you have a sore back, or achy feet.
  7. When any moment of intimate talk with your spouse does take place, or even quiet time–you look at your spouse and remember old times, memories of places you have gone together, things you used to say to each other. You miss the little jokes you once shared, the songs you sang, the silly talk between you. You start to hate holidays, anniversaries, birthdays and you avoid the thoughts that bring out the pain.
    Result/ you get upset and emotional, then you get mad at yourself for being silly and you get angry. You walk around the house just thinking of what you can do to change things and yet, come up with no answers.
  8. You wake up with an idea for your day; maybe you have a household repair that has to be done or a chore that has to be attended too. You have it in your mind, how you will go about the repair, or what tool or part you have to buy to make the repair. Then you start to care for your spouse. The morning personal cleaning of them, their breakfast, their pills, adjusting their chair or couch area, the whole process and then you realize that the day is half over. You have had no time to do the chore or to leave the house to get the tool needed.
    Result/ you get upset with yourself that you are getting nothing done around the house. The place looks messy, dirty, and it is over-whelming.  You start to pull back and force yourself  not to look at the mess, not even think of the repair. You just protect yourself from disappointment by ignoring your surroundings.
  9. You have had a stomach upset for a few days, you know you do not feel right. You get so busy helping your spouse and dealing with anyone coming over to help with the house that your own health is coming second.
    Result/you slowly become weaker in your own body. You start to have more problems. You feel allergies, problems with your bathroom habits, your own cleanliness. Everything seems to go downhill. You would go and get yourself checked-up with a doctor but the ability to be free to leave the house is so limited you just put it all on the back burner.
  10. Your family or children come over and when they do your spouse rallies up and looks so much better. They see a person that is doing well, maybe in a good mood and wonder what all the fuss is about when you call them.
    Result / your relationship with the family and old friends starts to go down. You call them less, you rarely ask them to help you. You know they are busy and so you simply cope. You feel upset towards others that don’t understand

All of the above things equal a care giver that is burnt out, tired, feeling helpless, angry, upset and that all twirls together into high stress and depression. It does not mean you are a bad person, or that you are not strong, or that you are not doing your best. It means that you need help.

HELP – HOW CAN I GET SOME OF THAT?

  • March your bottom into your doctor’s office and tell the doctor you need help. Let them know you are tired, upset, worried and simply have emptied out your energy pool. Let them look you over. Let them see if your weight, blood pressure, sugar levels, energy, strength and emotional issues are understood and treated. That way you can continue to care for your spouse with a renewal of energy and creative ideas to help them. You get strong, so you can be stronger for your spouse.
  • Call a ‘family and close friends’ meeting. Explain you need to have some time to breath away from the house. You need help with a few hours here and there to take your mind and body out the door and away from care giving to ‘just be you’. Let them come up with ideas; maybe they will offer to come and help, maybe they will offer to pay for in-home care. No one knows what you are going through until you share. I had to share and when I did I was shocked at how kind and loving my family and friends were to me.
  • Call a professional. There are companies that your doctor or friends can recommend to come into your home and help with different chores. If you are on a strict budget, do not worry…the companies that do this work, know all the ways to get paid. They will know how to bill you personally, through your insurance, through a local or state funding, or other means. Give them a call; it will cost nothing for them to come and give you an evaluation. They will tell you what you need and work within your budget. If nothing else get a bath lady to bathe your spouse so that chore can be done fast, professionally and allows you the rest while they do so.
  • Ask the doctor to advise you of an elder care social service. This is really nice. They are trained people who know how to find different services in your area that are free. They will help you get things done. They can advise you and you can alway say NO…but to know that there are people out there that will help you is so important. I have personally gone to the local hospital and worked with the social worker there. Hospitals are very community oriented and they want to advise you on services. There is no cost to go and talk to an Elder social worker.
  • Call your local Elder social services in your area. They will hook you into things that your state can provide for you. Often there is food, care, energy bill relief and medication money available from your state. It is a wonderful service and your tax money, all the years of your working life, have paid for these services. You are not talking anything from anyone – the state wants their residents to be safe and well cared.
  • Let neighbors and your faith community know that things have now gone into over load…do not be quiet. No one can help, if you don’t tell them your efforts and challenges. The help will be for you and your spouse…so speak up. Veteran’s, service organizations like Elks, local community services, fraternal and union orders, there are so many people who are waiting to give you a hand. Reach out…talk – tell them you have needs.
  • Hospice is a free service for those who are on a life ending journey. They will come to your home and make an evaluation and give you ideas of how to use their services. If it is not time yet, they will check-in with you every couple of months, if it is they will ease in the door and take over and give you so much more time to yourself. This service is so important and most people call them way to late. When you call they will come and offer food prep, cleaning services, medication, nurse services and the list goes on and on. Know that it is there…to allow you to return to the job you really have…the loving spouse. So you can have quality time during the journey’s end for your loved one.

The key to your situation is being brave enough to reach out for help. To talk, interact with others and to understand your personal strength is the key to good care for your spouse. You need to stay healthy and in a place of peace with your emotions. No one will take away the sadness of your situation, but they will honor it and help you find ways to work through the journey. I thank you for your loving care given to your wife. Blessings, francy

francy Dickinson with Missy

PS I am working on a care giving book for all of you…I’m excited to say it is scheduled for publishing in the next month. Yeah.

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