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I have been caregiver for my mom (82, stroke in Feb 2006, vascular dementia) since Oct. 2006. One of my brothers and his wife took mom in after the stroke. They needed help, so I moved across country and lived with them for 4 months until I found a place for my mom and me to live. We've been on our own for 5 months now. My brother's wife gives me 5 hours of respite a week, as well as random time here and there, and I get another 5 hours a week of respite from a paid caregiver. 10 hours a week sounds like a lot but, up until a few weeks ago, all of it has been spent learning the area and running errands (groceries, furnishing the apartment, researching assisted living facilities, etc).

Because of circumstances, I can't make it to any evening support groups and wasn't having any luck finding groups that met in the afternoon. I finally found one that meets from 1-2 p.m. and will attend my first meeting on Monday. I'm gradually trying to take some time for myself, which I know is important, but hasn't been easy to do.

Things were starting to settle down and I felt that I would be able to handle being a caregiver when I started getting visits from other family members who live out-of-state. They mean well and have even been helpful, but it's like the straw that broke the camel's back. I'm exhausted and the littlest things set me off. They don't understand. I feel I should be grateful for the help, but I'm not because it upsets my routine and I feel that my methods of caregiving are being constantly questioned. It's probably just curiosity and trying to make helpful suggestions on the part of my family, but it feels like criticism. I know I lack confidence in my caregiving abilities because it's all new to me (I don't have children, so I've never had the responsibility of caring for another person) and that adds to the problem.

I think my visiting family are to the point of thinking that there's just no pleasing me. And if I try to explain just how overwhelmed I am because of the complete upset of my routine, I'm told that I need to put mom in a nursing home since I obviously can't handle this. I think I CAN handle this if I can just get enough time to settle down from all the moving and changes and if I can find a good balance between time for my mom and time for me. Is that realistic or am I just fooling myself? Am I being too touchy?
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Hi, rdes.

Welcome to our little community. Frustrated, confused, overwhelmed... you'll fit right in!

Good for you for stepping up to the plate and helping your mom. It takes a special person to even offer, let alone actually move to a new town and do all you've done. She's very lucky to have you.

Family dynamics are tough. I'm guessing you are not the alpha sibling of your bunch? Me neither. You are wise to acknowledge that offers of helpfulness feel like criticism. Are they? Are they stated with an undertone of judgement, or are you just protective of your "turf?" Either way, you're as normal as the rest of us.

You could set ground rules to let them know it's your house - ask them to stay with your brother and SIL and only visit Mom, or sit with her so you can get stuff done. Post visiting hours if you have to.

My step-son and his 2 teenage boys will be here in July. I'm going to give them a choice to do one or two of a few outside repairs I can't seem to get done alone (my DH is disabled, and my mother is in a nursing home). My DIL already thinks my house is unsanitary (she has a germ phobia), so I just hand her the cleaning supplies on her way to the guest room and let her re-clean everything, and let her do the cooking (in 20 years she's never eaten any food I've prepared in my home).

Please continue to post. I hope things get better for you soon.

Hugs,
Barb
I'd like to echo Barb's suggestion of setting boundaries with your well-meaning relatives. My brothers don't swoop down on me, but my grown children, with their children do. I love them all to death, but I also need routine and quiet time. Weekends are the only time I have to get everything done and take care of Mom's needs as well. It's exhausting!

I have hospice in several times a week and feel sometimes that I'm not doing enough to take care of Mom. Then, to have my children invade me, well, you can imagine!

Now, when my son and his family visit from NM, my DIL takes over. I used to be very defensive, and as Barb said, protective of my turf. But, I've learned to use the opportunity to kick back a little.

My youngest daughter comes over every weekday to sit with my mom so my DH can escape for a few hours. However, she also tries to keep the house picked up for me. It took a lot for me to ask her, but you know what? I asserted myself as The Mommy. I've received a lot more cooperation since I started setting those boundaries.

I've learned to say, "Hey, if you don't like the way I do things, feel free to pitch in!"

Hang in there, and start setting those boundaries. You're a wonderful person for willingly becoming your mom's caregiver. But, routines are important for your own well-being. Perhaps you can talk with your family and explain that visits need to be pre-arranged so you can adjust your schedule and your mom's accordingly. I've had to do that and have even told my family that this weekend or that weekend won't work because I've made plans. My plans may be just to have a quiet weekend, but if I don't set time aside for me, I turn into a fruit loop!!!

Good luck!

Dee
Thanks, Barb.
A lot of people have said I'm special for doing this, but I sure don't feel special. Half the time I feel like an ogre and the other half like a scared little kid again. In their own way, my whole family has stepped up to the plate to take care of mom. We all know that she didn't want to be in a nursing home if it could be helped. You're right, I'm the youngest of the siblings (although 46 isn't that young!) so even though I'm independent and have taken care of myself for years, the others still see me as the baby. Even my mom, especially when the dementia is going full force, sees me as a little kid and doesn't trust that I can care for her. As far as whether it's really criticism or just defending my turf, I'd say it's probably 30% criticism and 70% turf.

Thanks to you too, Dee.
I'm still figuring out where the lines should be drawn, especially with my mom. I want her to feel in control of as much of her life as possible, but I know I have to be in charge for her safety and well-being. Not having taken care of anyone before, I'm having to learn how to balance all of that. I think with time I'll learn, but everybody (including myself) needs to have the patience to give me that time and forgive me my mistakes along the way. Maybe I'm having a hard time forgiving my own mistakes. I don't know.

I've had to just keep going, going, going for the last year and a half since the stroke. First it was flying out to take care of mom in the hospital; then flying out to go through the things in her house so it could be put up for sale; then packing and moving across country; then living with my brother, sil, their dogs and bird, mom, and my cats when I'd been used to living alone (except for the cats); then moving into an apartment and having to buy all the stuff I just sold to move here. I've tried working, but it was too much, so I'm living off of mom's social security and retirement, which adds another layer of responsibility to the whole situation. When the family asks me why I'm upset, half the time I don't know for sure. It's so much go, go, go with no time to process it or think. What do I want from them? Time off. What does that mean? Go away and leave me alone and take mom with you for a few hours!

One of my sisters is visiting to see if it will work out for her to move in with mom and me and help take care of mom. She really is helpful and it works out probably 75% of the time, but I still feel bowled over. We have very different habits in the areas of cleanliness, food and approaches to life and at times I feel that I'm the one making all the compromises. That may or may not be true--I can't tell. It may only be true because I've had to make so many compromises lately that a few more feels like too much.
rdes, your whole world and life style have been totally turned upside-down. You've proven that you are perfectly capable of taking care of yourself, and all of these changes in your life are probably very overwhelming. You've also proven your great strength and ability to make responsible decisions. Your love and devotion to your mom is so very clear and I admire you!

My only suggestion is don't rush into any decisions about your sister moving in with you. I'm sure the two of you love each other very much and want the best for your mom. However, if your personalities clash as much as you have suggested they do, you could be inviting more stress and frustration into your already overwhelming life.

My two daughters are as different as day and night. They are devoted to each other, but the occasional clashes really cause me extreme anxiety attacks! When they start bickering, my blood pressure goes up! Now, I'm talking from a mother's perspective.

How would having your sister, or anyone else for that matter, live with you affect your mom and her overall well-being? So, please weigh the pro's and con's very carefully. Boundaries are wonderful, but they only work if all parties involved can respect those boundaries. Enforcing them can be very hard if you're up against dominant personalities.

My thoughts and prayers are with you!

Dee
Just a quick update...my sister and I have decided that it isn't a good idea for her to move in. The place is too small for 3 adults and we all need to feel that we have our own space. I had a meltdown while she was here and, though she didn't understand why I was so upset at first, she did finally figure it out and was sympathetic. Her visit did help me a lot though. For once someone heard and understood that I was close to overload. I got a chance to rest a bit and re-think some of my expectations. Things have improved since she was here.
Thanks for your support too! It helps to know that the mixed feelings and frustration are normal.
Hi rdes...

Ahh well meaning relatives..yes, I agree...you have to set boundaries or all chaos can break loose..as your moms primary caregiver you need to do what is best for her and as importantly..you..
You should make up a list of do's and don'ts for any family member wanting to provide you a few hours respite..the time off is good for you but not if they are causing you more work when you do get back home..

take care
prairiegal

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