How do you plan anything in your life as a caregiver?

Imho, how my DH and I handled my late mother's elder years was, at best, walking on ice. We never took any vacation for years on important wedding anniversaries because, OMG, what happens if mother gets ill? I do not advocate this as now we're too old.

Ask family members to step in so you can have time for you. Plan ahead if you can. It took me a few years to realize that. You need to care for you too. It's important to your mental and physical health. I am lucky to have siblings who take my Mom on Saturdays so I can care for me. Im also lucky that I can plan weekends away when needed. a Daily Routine for my Mom is extremely important. It keeps her happy and I'm able to plan my days easier.

Get in touch with focus on the family and they may be able to help you with agencies that will help you.

It is so stressful to make plans and cross your fingers that everything will go as planned. I just can now plan 1 or 2 days out. And it’s still not a guarantee that everything will go well.

What I find in some of the solutions are money constraints. If you have the resources of the person you're caring for, ie a parent or grandparent with money of their own, that money can go toward hiring people to give you a break. But if you're a spouse, living on social security, barely making it before all this happened, what then? So far, I'm just slogging ahead. Because as one poster here said, no one who hasn't done it really understands the moment-to-moment stress of this and the moment-to-moment demands. They're just glad it's not them. I've told my sons, the main job they have is to help me stay on my feet, otherwise, something so big will be uncovered for them that they won't be able to cope with it together. Good luck and love to all here. --Essie

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!

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.

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.

Need more info regarding your loved one that is being cared for. Do they have Dementia? Are they Bed Ridden?Ect.

You can have a life being a Caregiver but if you're a 24 7 sole Caregiver, you will get burn out..

You should get someone to minimum, to Come in to releave you one day a week for you time.

You should still be able to have a schedule as there shouldn't be that many emergencies.

Install Nest Cameras so you can watch what's going on 24 7 from your phone or computer.

I found Nest Cameras easy enough to install and use.

Prayers.

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.

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!

I think 24/7 caregiving is a highjack...in & 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!

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!

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.

You can’t.

I don't see how you can maintain a consistent schedule with all of the things that can pop up when you are caring for someone. I work full time in addition to caring for my mom and it's hard just getting all of the time off for her appointments. I depleted all my PTO when I took a few weeks off after she had a knee replacement surgery and my job has a requirement that you have to have PTO in order to take time or you can get written up.

My mom has chronic pain, depression and cries several times per day. It sounds bad but I have gotten used to her crying and have to just continue going about my day when it happens. Doctors are of little help because they are all scared of prescribing pain meds. It is physically and emotionally exhausting. Sometimes when I feel stressed after work I'll go for a drive or a walk to have some peaceful time to myself. I can tell how her day has been when I call home during work. It's funny how well you start to learn their moods or how they're feeling that day by just a few words.

I am with lealinnie1's suggestions. The challenge for my situation is that mom won't want anyone to care or help her other than her children. Mom always say she feels bad that we have to take care of her 24/7 but at the same time I don't see her accept any solutions to help eliviate be some of these.. as simple as wearing a diaper at night so that we all can help a proper sleep at night. Instead she would get mad at us and said she doesn't need help and will go to washroom on her own... Which ended up no one can sleep with piece of mind not worrying that she will fall without any help.
Late 2019 I sold my condo and moved into my parents house temporarily while looking to buy a new place. Then unexpectedly dad passed away followed by Covid outbreaks. My stay at home is much longer than I have planned for and now I feel stuck.
Since dad's passing, mom who suffered from CKD is getting weaker as she aged - she is 85. My brother is a very filial son and very controlling and protective person. In my opinion, he over cared for my mom. He will follow my mom around 24/7, afraid she will fall (which mom also refuses to use a walker or cane to support her) or being alone. By doing so, mom started to depend and rely on us more and more, even for things she is capable of doing. My brother expects us to do the same extend for mom. My sister will stay up all night to help mom in and out of bed to use the washroom and on average mom gets up every 2-3 hours throughout the night. And I am responsible for helping her change in the morning and at night, shower and soak her feet nightly. I am also taking care of vacuuming and mopping and doing laundry. Tension among my brother, sister and I are getting worse these days as my brother is stressing out and will let out his frustration at my sister and me.
I am the only one working and to be honest, I don't think I can commit to what my siblings are doing for mom. I love my mom is no less than my siblings but I believe in balance. We are in our early 50s and we need a life too before things passes by us.
I have a boyfriend but due to Covid situation, my mom and siblings are giving me the pressure that spending time with him, I may run the risk of contacting the virus and passing to mom. We have not spent time since last September. While he understands my family situation, I am not sure how long will our relationship be able to sustain. I am frustrated and torn inside. Don't know what to do.
A few years ago, I have suggested that we get a caregiver to come visit and take care of dad or a helper to take care of house work but all these are shut down by mom.
Once Covid is behind us, we need a solution. I really cannot commit to staying at home and taking care of mom 24/7 like my brother and sister do. This is not how I want to remember spending time with mom.

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.

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.