How do you make a schedule and keep to it? Is such a thing even possible as a caregiver? How do you plan for things at certain times not knowing if your loved one will cooperate or if they wake up while you are in the middle of something important and demand your attention? How do I deal with this? I feel as though caregiving has completely hijacked my life. Any ideas?

If you are living together in the same home, you hire caregivers to come into the home for specific set hours on certain days each week. That's when you schedule YOUR appointments. Otherwise, you're literally a slave to your grandmother and her every need for every moment of her life which means you have no life of your own. That's not a long term plan but a sure fire plan for burn out and big time resentment. Don't figure out how to deal and cope with a hijacked life......figure out how to change the situation so you have less stress TO cope with.
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Reply to lealonnie1

Hi Kimmotion
My heart goes out to you, but you really summed it up with the term “hijacked”. I tried everything over the course of six years I had to quit no less than 4 jobs to care for my husband with FTD as he got kicked out of 3 assisted living facilities due to his acting out. The last time, I just said, ok, I’ll sit right here with him as long as he has left and make each day the best day ever. Worst part was I had no idea if he had 6 weeks, 6 days or 6 years left and I didn’t know how long I could do this. Anyway I Had to tighten down on any spending other than food and gas. Without my salary, we were barely making ends meet. However, when he passed away 6 months later, in a hospital bed in our living room, with his own Christmas tree and soothing Christmas music playing, I was so thankful that he was physically in his element as he left us. I guess I’m saying, if you have to do this 24/7, do your very best knowing some days, that won’t be great, but you will get peace from knowing it was done properly.
A practical thing I did that helped me do some things like run to the store and even go to church for an hour was to install a couple of Blink webcams in our home. I had them placed where I could see if he came out of the bedroom. When he was sleeping in the mornings, I would enable the motion sensors on the cams to text me an alert if he got up or there was any motion, and I could run out while he slept, and then I’d know to get back home ASAP. Doesn’t sound like much but the cams cost about $150 and being able to go out even just a little gave me a feel of normalcy at a very difficult time. Keep trying ways to make it work and think outside the box a ll you can..... your sanity depends on it. God bless and give you strength!
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Reply to NeesaLee

I think 24/7 caregiving is a & of itself. I do not know how to better explain it. I wish I had known of this forum 6 years ago. There is no life for me beyond this now. However, I have committed to avoiding negative thoughts during Lent. Only a few days into it, I realize how deep I have fallen into hopelessness. This is my first post. Thanks for being here & know you are not alone. Breathe!
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Reply to sixyears

Being a caregiver only works if it's done on the caregiver's terms. Not on the care recipient's.
Caregiving can completely hijack a person's life. You have a chance of having some kind of life if you don't live in the same home as the person you're caregiver to because there's the option of hiring outside help. When you're in the same house it's next to impossible for them to not own you and every moment of your life even if you do have homecare services coming in to help out. What pretty much all the time ends up happening when you live in the same house as the LO you're caring for and they're elderly is they expect to be waited on hand and foot even if they still possess some level of independence. They will expect themselves to be the only matter of importance and priority in your life, and forget everything and everyone else.
The only way to limit some of this is to walk away from it and abide by whatever schedule you have made. Do not drop everything and jump to attention for their every need and want. Make them do for themselves in whatever ways they are still able. Make them learn how to wait and completely ignore them when fussiness and complaining start up. This is way easier if you're not living in the same house. My best recommendation would be if you're going to be a caregiver to an elderly person, don't live together. Otherwise the caregiving situation will own your life and there's not much you can do for it.
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Reply to BurntCaregiver

Depends on the level of care demanded from you. As time goes on in the case of Alzheimer's the more helpless your loved one becomes, the more demanding and stressful the care will be for you, so you have to adjust the routine accordingly. ROUTINE is the key. Do the same things everyday the same time and place.

I remember I had mum on a bowel movement schedule, bath schedule. And I kept mom moving by walking her in the park everyday for 5 years. Despite mom's advanced Alzheimer's she was only bedridden for 2-1/2 months but it was a terrible struggle keeping her moving. Keeping mom walking made her care easier for me...when she became bedridden wow was that hard. Her bowels were extremely stressful. Thank God for lactulose. With mom's chronic kidney disease that's all I could use since poor renal function means I could not use any laxative based on magnesium or phosphate--poor kidney function meant she could become toxic with magnesium or phosphate based laxatives. So I used lactulose and it worked great.

My mom eventually depended on me 100% for nutrition, hydration and even bowel management. She became a full time job for years and years, and when mom died I was left devastated. Had to find work, and get my life in order. I managed but it was very traumatic.
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Reply to cetude
my2cents Feb 22, 2021
Thanks for the hint about lactulose. Will read up on that one.

Some folks say old people become obsessive talking about constipation, I thought it was just old age, too. Finally figured out, the less you walk and move the slower the gut moves.

You are 100% correct about keeping older folks moving. I so hope my parent continues to understand my push to keep her walking, as well as her own desire to stay upright. I remind her when I let her struggle a little with a task, that when i do it for you several times it will become my task and one more piece of the body will have rested for good. While some folks tend to cater to g'ma because she's old and it seems the respectful thing to do, it also limits tomorrow's abilities. My mom doesn't even want a lift chair because she knows it would diminish her arm and leg strength she uses to lift herself up.
For as long as you are the primary care giver, everything else has to work around your caregiving tasks. If there are specific appointments you need to keep without your LO, you may need to pay someone to cover that time. When you are the person "on duty," don't get involved in anything you cannot interrupt at a moment's notice.

When this conflict is dominating your life, it is time to hire help. You may sometimes find volunteer help, but I keep repeating the need to pay someone, b/c caregiving is not s free benefit in our society. People are sometimes surprised and angry that no one will come to their home and take care of their LO's for free, but they won't.
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Reply to RedVanAnnie

In the military we have a saying, "Nothing survives first contact." Translation is that your plans will go awry and it is better to have back up plans. So, plan for delays and the need for back-up care givers - because life does happen. After that, try to roll with the punches. Most days you'll be surprised when things go as planned if you are patient and drop your expectations.

That said, make it a rule that you WILL make sure to care for yourself. Get 7-9 hours of sleep every day. Eat 3 healthy meals are a reasonable pace. Take care of your health. Take "time off" daily and weekly to have fun, connect with friends, and do what nourishes your soul. If you have to use some of the "cared for" person's resources to ensure your health, do so.
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Reply to Taarna
my2cents Feb 21, 2021
I agree that time for self is very much needed, but in many of the situations (probably most of them) it just doesn't happen. Whoever steps up to the plate for the caregiver role is usually running on fumes and others who could help have no problem seeing them in that position.

Lots of comments like 'I don't know how you do it' which would indicate they acknowledge you have a tough job, but no offer to help. At first it sound rather appreciative. Later on it just means - glad it's you, wouldn't be me. Healthy meals, full night's sleep??? maybe someday.
I cared for my mom with dementia for 8 yrs in my home. Every other day I told
her she was going to the spa, meaning I would get her in the shower help her clean her private parts, and wash her hair. When she got out she would sit at my bathroom mirror and I would rub lotion on her legs, arms and shoulders.
she wore wigs so I would only have to blow dry her hair. She HATED bathing until I called it spa day. It’s a little extra work but she always smelled good and no hygiene issues. Also, ask friends to help, I’m sure you have some who have offered. Let them in, it’s a lesson for all, they see what you are going through and they want to help. It also helps them
prepare for the day they may become a caregiver. And last but not least, look to God every day! This was my only life saver and it turned my life as a caregiver from gloom to a blessing. Prayers your journey will be better!
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Reply to cdulac

Can you get aides to cover for you when you need to do things on a schedule? Get in touch with your local agencies or social workers so that you know what is available in your area. Medicare/Medicaid may cover some of this.
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Reply to NYCdaughter

You pretty much summed it up with 'hijacked your life'. It is constant interruption to the point your own mind finds it hard to figure out what you were doing, start a new task, interruption, start a new task all day long. I had excellent multi tasking skills when working. This is not multi tasking like anything I ever did while working. Part of the problem, as she says it, is that she tells me something when she thinks about it because she's afraid she'll forget. So I get it.

As for appointments, on the day before my mom will start mentioning if it is cold or raining or doesn't feel good, etc she may not be able to go. I say nothing or just agree. Why discuss it? Unless I can see she is really not feeling good, we're going.

There is no such thing as a daily schedule - except for meds and meals. All I can say is learn to accept the many tasks that are started and left unfinished and stacked all around you. . . they aren't going anywhere, and highly unlikely the good fairy (or the family) is coming to do them when you aren't looking!
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Reply to my2cents

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