Tonight was my sister's out-patient surgery. I thought I had done my best to plan things out so they would run smoothly. Boy, was I wrong! My husband got off work early to help me be with mom. I packed good things for dinner, healthy snack bags of fruit, homemade chocolate chip cookie dough to make for a little treat, air popper to make popcorn if mom wanted to watch the movie my sister had planned for her, and good dinner made for mom and sister to have tomorrow. My special needs daughter understood how we needed to really try to help Grandma since her aunt had to be gone. We were on time. She really tried and even helped me water plants as my sister doesn't even get time to do that there.
All was well until the commode issue started up again. It did take husband and myself to help mom get out of her recliner and I thought all was going well, until husband left and I was with mom for pottying. Once again, I got told many mean things and this time, I fired back as I am so tired of hearing what mom is complaining about and how she is expecting a literal butt lift to get up. I told her she is really hurting my sister making her do this as well as making her be a prisoner there to be available to mom 24/7, not even allowing her to go to church! I told her she has the choice to try to help get up, allow others to do it safely, or expect not good outcome as sister cannot lift her 24/7 in my opinion. I told her to watch the videos on Hoyer Lift so she understands her furniture in her house would be changed as it would be impossible for the lift to get her to her bed as no room. I don't think it is intended to drop her off at recliner and then transfer for to her family table chair either. I reminded her how the PT just this Monday told us all that if I were to lift mom like sister is doing, it would really physically hurt me. Of course, mom didn't like to hear any of this. She told me again how mean I am and she tried to take her walker to her bedroom to go to bed so I called my husband to come help as sister told me not to let mom get into bed as we would have super hard time getting her out and she would be just miserable. This was also before I had even served dinner!
Somehow husband convinced her to turn walker around and go back to have dinner but she didn't eat a thing. She asked my husband if I was always like this and he just said "yes". So mom wasted the special lobster tail I had made for her and had a miserable evening. Husband, daughter, and I just dealt with it, ate salad, potato salad, corn on the cob, and forgot about making the barbecued steak, and let her watch television.
When mom asked again to get up, husband and I helped her get up by putting our underarm under hers to try to propel her forward and up. She didn't like it but she didn't want the belt and neither of us do butt lifts like my sister does. She did use commode twice but so much difficulty on getting off that she had husband help on the second time.
I am not looking forward to more of this. But I will show up to help out when my sister has all her appointments, one of which is tomorrow morning. I will not have husband helping so it will only be worse. I am not looking forward to the commode issue again, alone. I would just like to learn a way to hep out and be successful. How would I do that?
I agree more with you that mom needs to be told exactly how it is. Neither myself or my sister want to step away at all. I just think we need to become a united team trying to help mom. I don't know if it is possible for me to get my sister to understand the importance of that. I only know because of my special needs daughter going through a delayed probably terrible twos and terrible teen phase but it did get better. That only happened when husband listened to behavior therapist who let him know what I know that daughter needs boundaries, direction, and both parents on the same page. Things here at home are going fine so that is really the reason I cannot go stay over night at mom's to relieve my sister of mom's ridiculous orders of "butt lift" off commode multiple times during the night. My sister just wants to help mom, but I don't really think that is the correct way plus it is compromising her own health now that she has melanoma.
God works in such mysterious ways. Today, being the last day of summer vacation for my daughter and I to spend together, we decided to make it a special day by doing our usual morning exercise routine, thinking about what could help my sister out on feeding her dog and fresh milk for both of them, and then doing something fun for us. We got the Kohls 30% off coupon so thought today would be a great day to go shop there and pick up 8 x 10s close by. Since sister said has to wear just button down shirts and she is really hot as the only button down shirt that apparently fits her and is quite warm, we decided to shop for a shirt for her. Coincidentally enough, while trying to find something that fit the bill of button down, XL size, decent fabric content, and not being too warm since stores all seem to be fully stocked for Fall season with nothing left for summer, we heard someone saying, "Alysia, is that you?" Sure enough it was my daughter's algebra teacher a while back at our junior college. She reminded my daughter how great she did in that class! I hugged her as she is really cool professor and told her the situation with my mom. She told me her husband had to bring his mom locally here to ritsy memory care facility. As a high school student, I actually remember going there to visit and sing for an elder. Honestly, I don't think my mom needs to go there right now. I talk too much (or type too much) as all of you might have deduced by now as it is my therapy as you must remember I have had a special needs very high functioning child for all these years now. After explaining my current situation, math professor advised that I do not do the butt lift thing right now as not right for me as I need to be able bodied for my daughter who is her grand-daughter. I told her how sister wanted to cancel last PT appointment for new week. So I asked her if it would be appropriate for me to e-mail the PT about the situation and ask if some other modification so I can safely help mom stand up of all the things she wants to do that from. She actually encouraged me to e-mail the PT as she knows Alysia and how her having legitimate Disability Accommodations allowed her to be a star student she even remembered from a few years ago.
So while we need lots of options as time goes by here with mom, perhaps it is not time to give up on PT just yet. My daughter's great former professor advised using Mom's insurance for PT visits but I am even willing to pay out of my pocket for other if mom will just do it so she can get out of a chair, etc, by herself. She can walk!! Why doesn't she want to try to gain strength if that is the problem, to get out of seated position? I hope it isn't because she wants to control my sister. I really am worried about my sister but will honor my mom's request to not hire any one as that is both of their choices I would suppose since they live together. All I know is I am so glad I get to go to work tomorrow to just forget about all this for a day.
God's peace to all.
Your mother sounds demanding, entitled, stubborn and selfish.
I agree with Tacy; her needs outweigh the help that you and your sister can give.
"Sorry, Mom, I can't do this anymore. You'll have to make other arrangements".
Having a parent be angry at you is not the end of the world. She's trying to control you through Fear, Obligation and Guilt. Call her bluff and step away.
You know what this reminds me of? It's a little story, once upon a time...
My best friend had a difficult toddler.* And I used to think, tut, she needs to be firmer with him and not allow these tantrums to develop. You know, like you do. One afternoon when all our kids were playing together at her house, she needed to run to the store for something and asked if I'd mind supervising. Of course not!
Within three minutes of her leaving the house, I was eyeball to eyeball with her son, in the vegetable patch, both of us yelling our heads off, and then he blew copious amounts of snot out of both nostrils and down his t-shirt - it was like something out of the Exorcist. Three minutes I lasted! I never even inwardly commented on her childcare again.
Your mother is a handful, and you are going to need reinforcements. She is not going to LET you succeed. Even supposing you sort out a commode technique that works, she'll sabotage the next thing.
Also, on a technical point - you can't fire back. Your mother is the vulnerable elder (she may seem about as vulnerable as a Sherman tank to you, but she is), and at the same time it isn't reasonable to expect yourself to be perfectly sweet-tempered at all times when she's intentionally hurting your feelings.
So - urgent help required, where can you get some? Any reputable agencies in your area? It'll be easier to arrange because you will be there to supervise, but you shouldn't be attempting this job on your own.
* I ought to add: the toddler is now among the most charming and kindest young men I know, and pursuing a successful professional career.
You are correct that I was wrong to fire back at my mom when she said all the mean things including some things are flat out wrong! I guess I really do think that mom still is with it enough on thinking to know what is going on. Maybe I am incorrect, but someone really does have to draw some boundaries since they weren't draw earlier.
Mom remembered last night's episode perfectly today when I had to go back there for my sister to go for another appointment today. Mom asked me to leave but my sister tried to explain again that Mom cannot get up out any chair alone and that is why someone needs to be with her. Mom didn't want any company, but that is not new comment from her as has been going on for years as company means work for mom.
I busied myself washing their kitchen floor and my daughter remembered she had not watered all the plants in the backyard and asked to finish them. Daughter acted perfectly again today, unlike what we went through with her behavior a while back.
Mom ranted and then after a while wanted to change from her pajamas to her clothes. They have very strange sleep patterns there and they get up very late (probably because they are up all night with the potty thing) except today sister had to go to another appointment so up earlier. I told mom if she wanted to get different pants on or changed I could try to help her but would need to help her stand appropriate safe method for me which means no butt lifting. Mom refused the belt which I was shown how to do. I told her she could try to push off her chair but she didn't lean forward and put her feet under her so that really doesn't work. I offered to help her try her PT exercises but she refused. So I went back to cleaning the floor so I was close enough to see she was safe fussing herself trying to stand up a way that couldn't work. My sister came right home from this appointment so was maybe like only two hours for me there today.
My sister has to go back for more surgery on the precursor to melanoma next Wednesday. I reminded my sister that she and mom need to decide if they are going to hire someone to help mom stand up or they would like me to be there again and it is farther away and longer time period. It is their choice. The problem is my husband works next Wednesday so cannot do two person lift with me and sister's second appointment is at 11 am, unlike last night's first go at the Mohl's removal. So that will still need to be worked out as I cannot lift Mom alone without using the belt currently PERIOD . I let my sister know that the butt lift thing is really our problem of contention and has been since all this started with mom's fall cutting her skin but not breaking a bone last November.
Mom told me specifically not to hire anyone and I won't but both my mom and my sister need to face reality now. It has been too long with this expectation of butt lift from me. I cannot and will not do that. Mom wants things that aren't realistic and my sister has been trying to allow them to occur for mom, but now my sister really cannot be there 24/7 as she has to try to get the lesion removed fully to not develop melanoma. I am not happy that she even has to go back for second go at it as it makes me worry something is really wrong already for my sister on that lesion, maybe because my dad passed away from cancer of unknown primary and he did have skin cancer lesion removed years earlier, but not the same kind sister has.
So the saga continues to go on and on and on. Nice friends who took my sister last night cannot take sister again next Wednesday as husband of that couple going in for surgery to blast a stone in his kidney the day before sister's next appointment. So plan A, plan B, Plan C really needs to happen now as this happens in six days.
I hate being the mean bossy older sister, but it is what it is. I think the problem is mom wants to be the boss. Sister accepts being bossed by mom but not me on the butt lift thing.
Why do the two of you put up with it? Why isn't she in a facility? (She won't even allow your sister to go to CHURCH?!)
Thanks for your reply. I am so disappointed that my sister has to go back for more Moh's on her face. Nice family friend that drove her to and from it texted me tonight that the pathologist had gone home when she was being treated so doctor doing the procedure could not finish. Why would Kaiser even schedule a surgery like that so late to not have the pathologist available to analyze what was cut? Just one more stress for my sister and she doesn't need any more. Plus this just makes me feel more guilty that I am not helping better.
I am very sad that I had a big mouth telling my mom what I thought about what she is expecting of my sister. When mom said mean things to me, I just got so angry and said what I thought about it right back. I am just so frustrated with the mess and had to just admit to myself, sister, and mom that I cannot do the butt lift thing the way mom and sister do it and that is that.
Mom says I want to control and that is true. I have to just say what I can do and what I cannot do. I bought mom a very nice comfortable raised toilet seat, commode, shower chair but she doesn't want to use it. She doesn't like change and maybe that is why she is demanding what she is with my sister. I don't know how sister can live there as I could not deal with that and not getting some decent sleep which I doubt both of them have had since mom fell last November (not breaking a bone but got bleeding leg).
Sister keeps going back to their routine there so I don't know how anything is going to change. But I do worry if my sister becomes sick or really does have melanoma diagnosis soon what will happen as I cannot do what she is doing for mom.
I keep praying for ideas to help us and try to keep learning. A year ago I would have had no idea this would even all be happening! How can things change so much?
I have realized that I cannot fix this and mom and sister will have to make some decisions as some things do have to change. I do not want to control their decisions, just let them know they need to make some. Life is not fair and but life goes on.
I think you're at the juncture where you are still reacting to you mom as her "old self". She sounds like she's down the path of demential somewhat. Maybe a good idea to have her tested at doc's to confirm and this may help you reconcile it in your mind. The line between their old self and new dementia self is invisible. You will just have to ignore the "mean" comments and redirect conversations to positive things and look at her with merciful eyes.
Regarding the practical issues: you can purchase a toilet seat riser that has handles on the sides so she will be higher up and lifting her won't be such a strain (I personally cannot believe you and sis are doing this...hello back problems!) There is also a device that you can slip under a chair or sofa seat that has grab bars in the front and your mom can at least help pull herself forward. It's on amazon.com
You can look into a service like "Visiting Angels" to come in a few hours every day as a helper and companion. Not sure of the cost in CA but in FL it's $22 p/hr which may seem steep but my aunties absolutely love their Angel (and this is after they wouldn't HEAR of it at first ;-)
Everyone has their tolerance for how much daily hands-on help they are willing to do and you and sis are very big-hearted for helping your mom age at home. But things will get worse and more intense. You can start just researching facilities because there is a learning curve involved. You will see she may be happier there because of the social interaction. My MIL in a LTCF loves talking to the nurses and likes all the attention they give her. It is not unloving for her to transition into a facility. But from your description everyone is already orbiting around your mom and it's not healthy and not fair to the others and your sister may be in over her head no matter how much help you give her. It may be time to let go of the romanticized notion of taking care of mom yourselves. Also, you're under no obligation to honor your mom's very unrealistic desire for you 2 to sacrifice your lives and families just so you can giver her a "butt lift". Please read all the thousands of postings on caregiver burnout by well-meaning people just like yourselves. Wishing your peace!
Thanks for your reply. Yes, I am thinking of mom as her "old self". She did remember exactly what happened last night today when I showed up to allow my sister to go to her doctor appointment this morning. Mom wanted me to leave. Sister explained mom cannot get out of chair by herself so needs someone there. Sister did leave and we survived but it was not pleasant again.
I will try to take your advice to ignore mean comments and just try to redirect or leave the situation for a bit of time. That is just very hard for me to do as I a do say what I think. I guess I will just have to bite my tongue. Today I did just say it would be best for me just to be quiet and did that a couple of times.
This whole thing will blow up again next week when my sister has to go back for more on the Mohl's removal as sounds to me like it wasn't all removed last night. I am already worried about my sister developing melanoma since she has to go back for more removal.
So the sage goes on and on an on. Thank heavens I do redirect myself as I have my daughter to get me busy doing some stretching, Yoga, biking, cleaning, reading etc. as that really helps me get a break from stressing on this. I tend to stress on things I know and want to find solutions. But this is really a challenge for me.
We would like to think we can "fix" everything. Sadly, we can not.
How a “Fix It” Mentality Leads to Caregiver Burnout - AgingCare.com
It is honestly very sad, but I suspect there is little to be done about such lifelong training. It starts very early often enough, and it starts with the withholding of affection, and the constant training that, no matter what you do, you will never be "good enough".
It would take someone with a full degree in psychology to even begin to tackle the subject I think. And it would likely take years to repair.
I am so sorry that you are not appreciated, Snowy. But it is good to see the love that you have for your Sister, and your support of one another. That is the light in this whole thing; that is the wonder. I hope she will make a speedy recovery, and thank you for doing all you can for her while she cannot be there.
I hope that you will have many years in future times to share a glass of wine and a plate of brownies, and get the giggles over just how bad it was once a long long time ago.