Dementia – Alzheimer’s Spouses Care Tips

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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

Alzheimer’s Secret – Highs and Lows

How to help Dementia and Alzheimer’s energy stay moderate not high or low…by francy Dickinson

Ups and downs of Dementia Alzheimers

George up and happy with Mimi’s visit

We just had a great surprise…a long time Twitter friend came to visit! George was up and happy and involved with meeting her and talking to her…but today – he is in bed. Does that sound familiar?

I really wanted to share the Up’s n Down’s syndrome because so many of us have experienced it and it leaves us (as care givers) feeling like we see another person from others.

When George has his family come to visit, he perks up and gives them his attention,  love and laughter. They walk out the door and he takes a crash dive and I have to pick up the pieces. It has happened so many times that I have learned a few tips and I thought I would share them.

You are not going to be able to help others understand that the person they chat with…is the best they can be. The senior is on a high in energy and is performing for them. The visitor sees that person and believes that is how they are on a full time basis. I have often gotten a little lecture about my comments on George’s condition; that they must be exagerated. That is always so hurtful to me.

I want George to be well, to be happy and live a wonderful retirement. I want him to spend time out and about and enjoying his life with his friends and family. But no matter how much I want that for him, it will not happen. George, has Alzheimer’s that means that he has up’s and down’s and I am the one that has to try to keep him within boundaries so his life is as rich as it can be on a daily basis.

As a lay-person, it has been explained to me that each of us lose bits of our working brain each day. If we are healthy those bits are replaced by the body. When a senior has Dementia the replacement of those bits becomes labored and then slows down like molasses. So, if George gets excited and uses up his energy and brain bits on a single event…it takes time for him to recover. He has to restore his body and brain energy and working parts. As the Alzheimer’s moves forward that replacement gets slower and slower and one day, will simply not happen.

That means I have a job…to decide what is worth George having a high and then a few days low. Some times I simply have to say NO, to an event in order to keep him on an even keel.

Here are some ideas to think about when you are making those decisions….should I take George to an event, or have so and so over to visit? Or, should I say NO, and be the bad guy. Thus, giving George a reprieve from a heavy low…that would take days to recover.

TIPS TO HELP YOU MAKE SOLID CARE DECISIONS:

  1. Make sure you remove your own feelings in this decision. This is a hard one; as the spouse of a senior with dementia…my life is involved in each decision too. So I try hard to step back and make my care decisions for the best of George…not the ‘best of francy’.
  2. Has George been having a solid and calm month? Not, the last few days…but the month. Alzheimer’s has a flow and monthly is the smallest amount of time I use. Maybe he has had a month of falls, or bladder accidents and emotional upsets that have been higher than normal. If that is so, then extra visits, events, or celebrations are put on a low burner.
  3. Plan ahead. I have a 4th of July celebration coming up. It is extra important this year because we have lost one family member and gained another. Many of my family is going to be at this celebration and I want George to go. So I am already planning ahead. I am going to make sure he is exercised each day of June.  That he does not miss any of his meds, and has plenty of sleep. I have decided on the day of the celebration I will take things to make sure he can have a mid-afternoon nap and will eat well, with extra sugar to give him energy.  I am planning that far ahead…so he will go through the day with the least amount of stress as possible. If he gets extra tired…I will be ready to leave the event and go home.
  4. Visiting at our home or going out? I find that George is getting more and more attached to the ‘safety’ of his own home. It is easier for us to have a visitor here…one or two at a time. I can remind him of the visit a couple of days ahead. I start to talk about it and then he is eased into the idea of excitement. I make sure he is up early that day and gets ready and then has time to be calm before they arrive. I remind him again of who they are and I always serve food to calm him and keep his energy up during the visit. I keep the visit down to no more than two hours. (as time goes on, this time limit will dip down to no more than 20 min.)
  5. Events out. I have been surprised lately that George does not do well going out to dinner. He does well out at lunch. But dinner upsets him, he is bothered by all the people, the noise and thinks the food is bad…so why take him out? Because I want to keep his mind feeling that going out is ‘safe’ and normal. I have decided that I will only take him out to lunch from no on. The stress of after ‘4PM out the door’ is too much for him. I try to think up ‘out of home’ visits weekly – but make them calm and easy on George.
  6. If George goes out to my sister’s home and visits, he is fine. He knows the home, the people and he just sits and enjoys his time. It really gives him very little stress. If he goes to his son’s home with family, he is fine. But he goes there less often so the stress is higher. Now if he goes anywhere that he does not know the place, or many of the people are new to him – that is no longer good for him. Even though his life has been very social, he traveled a great deal and loves people— George is not his old self. I have to remember that and work around his fears and upsets…and make his life ‘safe’ as much as I’m able to do.
  7. Surprise is not a good thing for George. That is what I try to keep to minimum. If someone is in town and calls to come and say; HI. I ask them to wait a while, so I can approach George with the news and let it sink in. Let him get up and get dressed and not be too rushed. Let him know they are coming and I talk about it with a calm voice and up energy. I ask the visitor to come around 3ish…and to stay for an hour. It can be embarrassing to do this to people…but I have learned that it is worth my discomfort if George can have a nice short visit and still feel well the next day.

The point of the above tips, is to show you how I am now just easing the way for George. I try to keep him in the loop of our daily lives. But I no longer share the heavy stuff. I don’t talk about bills, emergencies like my car needing repair, the chores around the house that need to be done, or the choice of what food to eat for dinner. Those ideas and thoughts would take George into a worry and maybe a depression.

This is where the hard part starts. Because as a spouse, the sharing of daily life is what you do with your spouse. George and I will be married 30 years this September…we have been bestest friends and he had been a business professional. To leave him out of the loop of life’s pressure is totally foreign to me. But I have to ‘man’ up and know that life is now mine to oversee.

What I also have to know inside my mind? That George’s health is important to me. So is my health. That means I have to make decisions that are good for George and are still healthy for me, as the care giver. I often have to say; “I have to come first, in order to have the energy to care for him wisely.”

It’s hard to explain to others, when they just want to stop by and take George out for coffee. Some times its a good thing, some times it’s simply is a NO. Don’t be afraid to be wrong, we all make decsions that turn out to be not the wisest in the book. But do get in the habit of thinking small daily issues through. Take your time; one day of not caring, could mean two weeks of you helping your spouse through a tough recovery. Days of no energy, confusion, anger, depression…that is a hard way to learn that thinking through your daily activity choices is important everyday.

Blessings on all that you do. I wish you well with your decisions. George just had breakfast in bed and I will get him up later to sit in the sunshine for a while. Other than that, he will be resting today…healing after our fun visit with our wandering Twitter friend.  😉   francy