Taking care of yourself......

Rich Petersen

Hello all,

So much great information here, and I've learned so much reading all the messages.

99% of the messages talk about the patient, and rightfully so. However, what do you do to take care of yourselves as caretakers?

I've served in the military and have seen and dealt with things no person should ever have to deal with that were very stressful. However, I can honestly say that taking care of my mother has been extremely stressful for me and is the hardest thing I've dealt with. My stress levels have simply elevated to 100% and have stayed there. As soon as my mom wakes up, the challenge starts. Then there is all the family members, while meaning well, call to ask how she's doing, etc...

It seems there is no "escape" from it all. There are times I feel like an anvil in a blacksmith shop just getting hammered all day with no respite.

Don't get me wrong, I'm perfectly willing to deal with it until there comes a time where I cannot provide the quality of care she deserves, for I know I will give her the absolute best care, attention, and overall quality of life she can get.

I bought a 2nd home, as my wife was going to retire last year, but as she is a special needs teacher, was given a huge raise to stay on for one more year. So she is still living at our other home so she can work, while I'm up here alone with my mother. My wife (and her sister) both come on the weekends, so that gives me a little respite, but I'm finding it's not enough.

But that being said, how do you all help yourselves? I am looking into having a nurse come to the house to help with my mom, and I've also decided to hire a cleaning service to help with the house. But I'm looking for other ideas as to how you all cope with the stresses of taking care of your loved one.

Thanks,

Rich

SusanB-dil

Hi Rich - Yup - very stressful. Some of us don't get much of a break... even though ours is a rather strange situation. I'll just say we manage. It does help that mil's sister helps most Saturday evenings, for a few hours, and calls that our date night. That does help and it means a lot.

Depending on your mom's stage - you may qualify for some hospice help. In cases of dementia, hospice can help earlier than other situations. If she is in earlier stages, though, you wouldn't qualify for that assistance - So that is good that you could get some help in there maybe a couple days a week with a nurse, or a CNA type service. Another possibility is that there are adult daycare programs available in some areas, where you can bring her there for various days of the week. You can also check your area memory-care nursing home, some will take in a LO for just a week or two as a respite break.

Emily 123

I completely understand--there is no break from the vigilance and interactions, there's not much private time. My house is not big, and I felt trapped, especially as my mom was watching me all the time for cues. My sister-in-law suggested that I start ordering out for my mom and myself occasionally, and also to buy more on pre-made meals. We have a Wegmann's nearby and going online and ordering dinner gave me back some time, plus no mess to clean up afterwards. On Sundays, when I did have time to cook, I'd make extra and freeze it.

The previous version of this site had a thread that the spouses got going with time saving recpies, and it was great. Not sure it's still out there...I'll go look and if I find it I'll bring the lnk back here. Every little bit helps.

I think you're on the right path with outsourcing tasks. There's just not enough time in the day. Absolutely look into getting an aide in as SusanB-dil suggested. It's important for you to be able to get a chance to breathe. Definitely look into the respite she suggested as well. You need to nuture your own life and relationships to stay healthy.

M1

Hi Rich. I don't envy what you're doing and think you're very wise to look after your own interests too-preventing burnout is a huge issue. My partner is in MC, but even now it's still an issue, and caring for her and visiting her 2-3 times a week (an hour away one way) dominates my life. Outsource as many routine tasks as you can afford. I have to make myself try to be social and try to do one thing a week to stay connected to friends and family, even if it's just a phone call. I wish i had more practical suggestions, but you are very right to keep this in your priorities. I bet you're counting the days until your wife is with you full time again.

Rich Petersen

Thanks all, yes I had a conference with her doctor yesterday. He ordered a "home assessment" with the hopes that it will be approved for a nurse to come and help with meds (she refuses to take them, and I have to wait for her to take them in front of me), bathing (my mom stopped bathing herself. While I would do it if I had to, well, I prefer not to bathe my mom) she also stopped eating regularly. So hopefully this gets approved. One huge advantage is that I work from home so I'm here with her 24x7, but while that's a big advantage, it's also at a disadvantage since I am always here (sounds funny I know).

Anyway, even if the assessment doesn't convince the insurance to allow for a nurse, my siblings and I decided last night we would have a nurse come anyway and we'd all pay for it. Luckily, my siblings are 100% behind me and totally understand the need. My siblings have also agreed to come regularly (we came up with a schedule so mom has a nice influx of her children coming throughout the year).

I also belong to a Masonic group, and my brethren are going to start visiting me although this home I'm living in with my mom is 60 miles away from my other home which is near our Masonic Lodge). They will bring their wives, and while the wives watch my mom, I can go out and grab a beer with friends. (Yes, they are fantastic people)

So basically as much as I'm dedicating myself to my mom, I'm "reserving" some time for myself and trying to be proactive in taking care of myself. So I've been very busy along those lines since my original post a couple of days ago.

I hope everyone else out there is taking care of themselves as much as they can to. We are so dedicated to the care of our loved ones, we tend to forget about ourselves.

2parents/brain change

Hi Rich,

(one of my husband's dearest friends is named Rich), so pleasure to write a note of encouragement to you.

Your way of putting into words the current situation in your life is service to others! I admire your courage and will. The effort you are making to care for yourself is the most important piece, as it is crucial for both of you.

All I can say, is wow, what a great reflection on living with a parent with Alzheimers and keep up the amazing work. Thanks for inspiring me.

Emily 123

This sounds great Rich! I totally understand about the working from home thing.

Others will chime in too with things to try…I hope this is helpful…

My mom grew up when showering ever day wasn’t a thing, and as a child a bath would have been more the norm. See if drawing a bath and letting the bathroom get nice and warm lures her in. If you haven’t already, letting go of daily showers helps. If she can do wipe downs it’s ok. Keeping the room warm helps a lot.

A taste for the sweet things grows with time as the disease affects how things taste, and a person may graze more if the food they don’t initially eat is taken away and then brought back. Sweeter things tend to go over well. My mom won’t drink water, but will drink juice and Gatorade like a champ. She likes the yogurts that have the little built in cups of add-ins, because they’re dessert-like.

Sometimes it can be a texture thing too, and any way you can sneak calories can help, even if it’s not the most balanced meal. My mom stopped liking anything that mixed foods over noodles or rice for some reason, but loves soup and crackers—I think it’s because she started to struggle with using utensils, so soup and finger foods are easier and she’ll shy away from the utensils as they’re harder for her to use.

Milkshakes and smoothies with yogurt do the trick for my mom, and I can stealth in protein powder or even a med (check with your doctor about what can be crushed). Pudding or applesauce are good pill conveyers too.

It sounds like you’re doing a great job!

vab2024

@Rich Petersen it is very stressful indeed. You're right to ask about caring for one's self. A few things I do: (1) exercise; (2) yoga; (3) meditation; (4) being out in nature as much as possible, even if just in your own back yard. I understand the desire to care for your mom yourself for as long as possible; I'm glad you're looking into nursing assistance at home; as someone else flagged, hospice may also already be willing to take her (I believe Medicare pays for hospice). If a long-term care facility with a MC is an option (depending on your state, the state's healthcare plan my cover some costs), that could be a best option, both for her own safety/care and for your own health and sanity. One thing to consider is that having a first degree relative with dementia more than doubles our own risk, and chronic stress fuels that if unmanaged or unabated somehow. So for your and your wife's sake, do take good care of yourself as much as possible. Hope this helps!

M1

Rich, be prepared that Medicare covers very little home health assistance unless it's after a hospitalization or major surgery. For custodial care like your situation, they probably won't cover it and you will likely be faced with private pay, and it will likely be an aide, not a nurse (important in part because they are not qualified to supervise medication administration). If she has qualified for Medicaid long-term care, she may be eligible for some servcies to keep her at home and out of a nursing home on the state's dime. But it's good that your siblings are on board.....and as others have suggested, you can always ask for a Hospice evaluation. There's no harm in asking.