What ways do you find most helpful in being able to cope with being a caregiver?

You all will think I'm crazy for sure, if anyone even reads this,
but I stumbled across the comment I made in this thread and it made me cry. I needed to read the words I wrote. It's been a tough 2 weeks adjusting to this next phase of dementia. I'm grieving the loss of my mom, bit by bit. I'm tired. I was accused of spoiling mom because I got out of the bathtub to fix her TV remote. The poor thing has very few things she enjoys anymore and her TV and phone are pretty much it. That's not spoiling her, if I had waited until my bath was done she could have got really confused as to why I didn't come and then possibly called someone and told them some odd story (new behavior). It took 2 minutes to fix it. Besides, one day she won't even know me. :( Anyway, I'm rambling....just typing my feelings seems to help and that simple reminder of, 🎶 One Day At A Time Sweet Jesus🎶 ....and.....🎶Many things about tomorrow, I don't seem to understand, but I know who holds tomorrow, and I know who holds my hand. 🎶 \0/

Support groups helped me. My mom has Alzheimer's and attended a day center when she lived with me. They provided educational classes and support groups that helped me tremendously. It's very helpful to bond with others that are going through the same as you. Also the advice I was given was instrumental. Every time I went to a class or talked to someone, I found out about a service a program that would be beneficial to me or my mom. Take advantage of the resources out there. You may be able to get respite or services for your mom that can take the burden off of you.

Also have a plan. How long do you want to do this? If you decide you can no longer care for her, what are your options. It is best to have this plan beforehand, so if and when the time comes, you are not running around last minute. My husband and I agreed to care for my mom for 2 years. She has Alzheimer's and bladder cancer. During that time, I visited memory care facilities and placed her on the waiting list. You can always decline when a spot opens up. Good to have a plan B, you never know what can happen in life and its good to be prepared.

I have been taking care of my mother and sister who is blind in my home for two years. Before they moved in I tried to maintain their home so they could stay there as long as possible. That was very exhausting at the end because my mother would not except help from outside aids and she was not safe staying there anymore and my sister was not receiving proper care.
One if the things I have done in order to keep a personal connection with my home so it doesn't seem like a group home or nursing home is I don't allow napping in my living room. If mom wants to take a nap, she has a recliner in her room and I send her there. This may seem petty but I keeps my living room a living room and not sleeping quarters. My home is small and moving two grown women into it was a huge adjustment. For me that is one way of escaping from being a caregiver.

You are going to have to give yourself a break every now and then. Full-time caregiving is impossible to do, e.g. get a trusted friend to give your elder that ride to the doctor every now and then.

Hi, Everyone. This is only the second time I have posted anything on this site. I do read Aging Care regularly and get a lot of help and encouragement from the members. Thanks to all of you. Lately I've found one more helpful suggestion for dealing with my mother (she's been living with us for almost two years-alheizmers/dementia). I download either music or an audio book to my cell phone or tablet and pop in my ear buds. If I'm worried about not hearing things when I need to, I just use one ear bud and keep the volume down. It helps a lot. Mom can be in the livingroom with the TV turned up as loud as she wants , watching the same show for the 2000th time while I'm fixing dinner and dancing to the music (the cats usually run for cover and the dog looks at me like I'm from outer space, but what do they know?) or cleaning the bathroom (Ick! ) while listening to an interesting story. It really does help me stay calm. I hope it helps others also.

Valium. Seriously. I don't have the time for yoga, meditation, etc. I used to go for exercise twice/week. My Mom is living with us. We work full time (& I have a 2nd part time job). We have a full house ( rescue dogs/cats) as well as our volunteer work, etc. Valium. Alcohol gives me a headache.

You could check with your community, most have an Office for the Aging, they should be able to advise you on services available for the elderly and ill.  Also the Alzheimer's.com website if you are dealing with demantia and memory impairments are a good source to speak with.  Also contact assisted living and/or nursing facilities in your area, they may offer respite stays overnight  or day care programs.  The overnight will probably have a protocol on length of the stay. Pricing will differ as well as paperwork required for both.  If you can find the right fit they both work, it's an overnight stay or gives you days to get things done or work.  The activities, socialization is the best.  Good luck!

Geordie...

You do not apply for respite care. First you have to figure out who will cover the hours that you will not be there. Then you figure out who is going to pay that person.

There is a local daycare center here that has lunch and various activities....it costs $45 for an entire afternoon....noon (with lunch) till 4:30. That is one option. Another is...hire an inhome caregiver...this will cost about $20 per hour. (Agency costs.....I recommend you use an agency for safety sake).

Mom should probably be the one to pay for this. Medicare does not pay for it. Medicaid only pays if she qualifies...meaning no assets and income below the poverty line. Otherwise...there isn't anyone to pay...so there is no where to apply

How do you apply for Respite Care, that is what I desperately need

I call it, "One day at a time sweet Jesus". If it were not for the strength I draw from The Lord I wouldn't be able to even get up in the morning. I too have felt sick and unhealthy at times. I do my best to take my vitamins when mom takes her meds. I do my best to remember mine. I let light into the house. I keep plants because they are living. I live my life as a caregiver one day at a time. I try not to schedule anything but doctors appointments. I cut my hair to a manageable length because hair appointments are too hard for us. I shop online and accept that it's my life right now. I'm soooo thankful for Walmarts online grocery pickup! I have found that the easier and more simply I make my personal life, the less expectations I have. The less expectations the less disappointment I have. I take things one day at a time. Even with things simple I have those days when I feel caged in and need a break. Sometimes I get one, sometimes not. I have made our home as pleasant and peaceful as I can because I'm here a lot. I try to at least decorate one area on my kitchen counter for each holiday. Right now it's done up for Valentines day. This little spot on my counter brings us joy and reminds me to keep celebrating. Before my dad died I told him that the holidays wont be the same, Christmas won't be the same and I never will forget his reply...."Awwww honey, the celebration must go on....Jesus is worthy!" Much prayer pours out of me, glimpses of scriptures on my phone app helps through the day, texts from friends, Instagram pictures, hot tea in my favorite tea pots, hot baths at night before bed where I sing and pour my heart out to The Lord. I NEED this bath time. 🎶Rock of Ages cleft for me, let me hide myself in thee🎶. Sometimes I feel like I've lost me and will never find her again. I'm here, just wearing a different hat for the time being. The Lord said in Psalms 34:15 that his ear in tuned to my cry. I have a Savior who loves both me and mom, who hears us when we call and who will be with us to the end.
I'm sorry for rambling, but I needed this to remind myself of the things I do to keep going. Long after mom is gone, I will be doing many of these same things. :) God bless you as you care for that loved one.

I commend you for taking care of your mom, who better! I took care of my mom for 2 years, RIP, it was the best 2 years of my life! I am now a caregiver to my brother, 70, with Alzheimer's, the 6 years has been a roller coaster ride. Remember to take care of you as well, free of guilt. If you are tired, rest; hungry, eat. Find something to do that you love, need and cherish it. Do it. Consistency, routine and structure is a must for caregiving, but for caregivers as well. Seek help, share your concerns and feelings without fear or shame. Glad to hear your sister is there for you, family is the #1 choice and the best. I'm it now and with his needs, behavior issues, yes, part of the disease and his old self; it's been a challenge. I am always seeking the "right fit" to help him and me and it's tough. A daily day program and occasionally respite care have been a blessing for both of us, minus the cost factor, it's a necessity that has been a #1 priority from this journey's beginning. Education and knowledge is good, I listened and learned, doom and gloom, but it does help. Feelings of anger, depletion, sadness, too many to mention happen, it's ok to own them. I have found that instincts take over, we take a breather and carry on. Love and caring, prayers and faith have prevailed. Stay focused and strong and God Bless!

I was caregiver for Mom for many years. We had built a MIL cottage next to our home. She still wanted me nearby. I checked on her regularly, prepared her meals, and helped her with baths. Tucked her in bed at night with a big hug and kiss. She knew she could call and I would be down the walk and with her in minutes. However, I went each day to the grocery store (which she accepted) and while out I had lunch alone. Also I went and had my hair done each week. Had a manicure & pedicure every three weeks. I felt I had to do this for my sanity. She died at 94 and I am glad I have no regrets. Don't feel guilty for taking time for yourself. We are all human and need to be recharged.

Murphyclm, your post stuck a chord with me and helped me identify one of the things that probably contributes the most to my caregiving stress, the inability to get my mom in the car and simply go out. Once upon a time mom and I both enjoyed hopping in the car to hit the drive though for lunch or a coffee to eat at the local park, or going to the beach to listen to the waves and feel the wind, or simply cruising the back roads while I gave her a narrative of everything I saw. It filled our time, gave us something to talk about and as a bonus we sometimes met people to chat with. I miss that.

I'm 59, almost 60, yikes! Anyway my mom has lived with me 3 1/2 years and is currently in the later stages of dementia: Here is what I learned:
1. TAKE CARE OF YOURSELF - absolutely top priority - you can't take care of anyone else if you are not taking care of yourself.
2. I hired private aides to come in because I am still working full time, or trying to :). My mom had the money for a period of time. That just ran out so now mom is on Community Medicaid which allows the payment of aides in the home - could provide more info for anyone interested, it's been and is quite the process. Also I'm located in NY. Not all states have Community Medicaid.
Yes, I had to get past having people in my home. It's been trying but the ultimate goal is awesome care for my mom and keeping her home and keeping my health, after all, none of us are getting any younger :) .
3. I learned to meditate - I always thought it was a bunch of bunk, but learned that it was not! I take 10 to 20 minutes twice a day, worse case once a day first thing in the morning.
4. Exercise and stretching. I do some basic yoga stretches, also fist thing in the morning. I also walk outside or ride a recumbent bike. Depending on the time available and the weather. I shoot for 20 to 40 minutes, depends on the day.
5. Eat healthy, take supplements if necessary, a good multivitamin.
6. I set mental intentions, which took some time, so that whenever I look at my mom in the eyes, I say to myself "patience, compassion and love" over time it just came natural and that helped ground me while taking care of her.
Those are the primary things I do, what a difference it has made. I am much calmer during the day which is much better for mom.
This is a wonderful forum, extremely helpful. Good luck and take care of yourself.

What would we do without AgingCare.com?!? I placed my despicable Father in assisted living one month ago. He is 91 & severely demented. What a relief that was! I now have my Mother who is very sweet, living in a house next door to me. She is 88, has had 2 strokes, but is relatively self sufficient. The problem with being the main (and only) caregiver, is it is never ending. As most of you know, it is many years of giving, giving, giving with not much in return. My 2 siblings are out of town and useless. What has helped me the most is simply asking for help. Hard to do. When people say they want to help, I take them up on it. In my experience, the people that want to help seem to enjoy it. It takes a community to take care of an elder just as it does to raise a child. It is so easy to lose yourself in this mess. Make yourself the top priority. If you don't no one else will. Thank you for this community where we can b!tch, learn, & love.

This was the world of my sister who lived with her and my sister's home and me who lived nearby. My mother was stubborn and mean when she drank. I don't recall dementia as I think she was too young and hadn't gotten it but the alcoholism was just as bad. My dad is 94 and I now live in his home. Most of the time he's very pleasant but very OCD and rigid about everything but when he wants to disrupt the schedule then I'm living on the Tail of the Dragon and having to do what I need to do at his mercy and Disposal.. it's a very tough way to live but I know that his days are numbered and I want to make everyday as good as possible for both of us. He now says horrible things at times but I'm told he doesn't have a filter anymore and his frontal lobe and can't control what it said and has a heart as big as all Outdoors so I try very hard to get over it quickly as minutes later he forgets he even said it or apologizes. Support from a caregiver group has been wonderful. Check on Facebook and the internet and you'll see they have many call ins like one on Monday night for me or meetings plus resources and organizations and reading materials. COPD is brutal and it came from my mother smoking her whole life. It's a terrible way to go but be sure to get hospice involved as they will make the last 6 months which in our case was almost a year tolerable and even Pleasant it times and the very end a wonderful memory. They then support the family. Best of luck

I'm starting to feel guilty having my Husband entering a Dementia facility in 4 days. Taking care of myself seems somewhat selfish to me as we've been told to take care of others. I'll do ok as I have support from family and friends and plan to do a couple of things like getting back into Bible Study with my 40 year church friends. People tell me I'm suppose to be happy by not being a caregiver any longer. Yes, I guess so since the facility can do more with Hubby that I can in the way of activities. The only thing I won't miss is the toilet duties :)

I realize now how nice it was that my sister was (and still is) available in her home during the week and probably deserves a medal just for that. I'd put mom in the car, and we very often would stop for some groceries and either cook lunch over there or run for Arby or Chick Fil A sandwiches and sit with her for an hour or so. Her household is lively with two dogs (always happy to see us) the nephew (a third shifter) and grand-nephew (who does high school online) most weekdays. I think Mom and I survived each other these last two years and needed that third (fourth or fifth, if lucky) person's conversation now and again. Funny that my sister and I have not been really close over the years, but we both agree we will have good memories when mom's gone of all these little lunchtime get-togethers. I see my sister now most often at the memory care center (where she works weekends and where mom's been placed), so this bond continues. I'm very grateful for the few others who've been there for me and still are. And reading so many good questions and helpful answers here on the AgingCare forum has been very helpful.

I have a plan for my life after caregiving. I work everyday toward that plan.

If I get nothing else done...I research aspects of my future plan. I read about it, I plan, I do.

Everyday. It keeps me sane and grounded.

shar, you touched on the thing that is most important to healthy caregiving -- family connections and help. A lot of times family just dumps it all on one person and goes on with their own lives. If everyone can share and pull together, it is easier and more meaningful.

... And if you don't have good family, taking time for yourself and getting exercise helps a lot. Sadly, this runs thin after a few years. Good family is the best solution IMO.

For nearly 2 years I cared for my bedridden Mom in my home before she passed on over a year ago. In order to do this I made it a point to compartmentalize my days and weeks to one at a time...just get through each day and be grateful for making it through. I also made it a point to behave like a nurse, so to speak, by learning everything I could about my Mom's condition, medications, diet, etc. I bought fresh flowers for Mom's room and played her favorite music while she ate. I established a routine. I grabbed whatever moments I could for myself for a quick shower with nice bath gel, a good mystery to read, many adult coloring books, watching the birds and animals outside, watching the sun rise, etc. When my husband was home I ran to the market. I got up very early each morning to get on the computer and on Aging Care....communicating with other care givers on here truly kept me sane and going in order to face each day one day at a time. Compartmentalization of each day, routine, and grabbing small moments for me.

Learn to practice mindfulness/meditation from a class or online. Practice it even 10 minutes a day it will make a big difference.

Good for you to recognize that you need to do something for you. Remember, you are the most important person in this equation, and unless you take good care of yourself, it will be very hard to take care of your mother. That means eating healthy, exercise, taking time for yourself and your marriage.

While my mother and dad did not live with us, I was still deeply involved in their care. They were in a senior "independent" living with assistance, and they needed a lot of assistance. Ultimately they both needed to be under hospice care, not because they were expected to die within six months (although that requirement might vary by state apparently), they needed more and more assistance. It does not cost anything to have a hospice evaluation done. What they can do is give you more opportunities to care for yourself as they do some of the tasks (bathing, OT, PT) with their patients. And I also did some light-hearted things, like putting cheery postage stamps on any letters and bills I paid for them. The last page of stamps I got was of ice cream desserts. They made me smile.

And come back to agingcare.com regularly. It has been a wonderful source of encouragement and information.

I feel for you. I agree with all the above. I swim for an hour at least once a week, then have a relaxing pot of tea, on my own with no phone signal. My time. I don't feel guilty about it. Good luck and please be kind to yourself.

Thank you all!! I like all of your ideas. I definitely need to take better care of myself. I feel like I am the unhealthiest I've ever been in my life. Churchmouse, I would have to drag my mom screaming and kicking to respite care. However, I did just talk to my sister and she agreed to come over once a week just so that I can get some "me" time. I'm sure that will help. 97yroldmom, I just got a glass of water and am going to exercise at lunch. Thank you!

When I was caring for my Mother 24-7 I always thought in my mind to just get through that day only and sometimes I'd think to just get through the next hour only.doing the best I could,one day at a time.
I have also kept a journal and writing down my feelings in it has helped I think and the wonderful caregivers here on AgingCare have been so supportive too through it all.This is what has helped me and still helps me now that Mother is gone.
Take care,Lu

Exercise beats the anxiety back. Even if it's Just 10 min at a time try to do 20 to 30 min. a day. Hydrate. Set a goal for glasses of water per day, and as CM has said community and sleep.
Make sure you get protein and veggies in your diet before stress eating. And give yourself a big hug. You are a wonderful person.

CM Can you share where to apply for bribes?

I stayed at mom's house for a few weeks when she broke her hip. I was going crazy just being with her for that long. I sat on the porch for short periods. Looking at the sky, trees, etc. Had screen door so I could here her if she needed me.

At the risk of being suspected of accepting bribes, I have to say that AgingCare was by a very long way the single most important thing that saved me from suicide, murder or total mental breakdown.

Runner-up: respite care at an excellent facility for a week at a time. The idea was to do this every three months - it didn't quite happen like that, but the two occasions when it did work at least allowed me to get some sleep. I'd recommend getting a schedule of respite breaks sorted out as early on as you can.