How do you relieve the stress of caregiving?

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My husband and I have been caring for for my mother in law with dementia and insulin dependent diabetes for eight months. Everyday revolves around her and her medication and her meals and fighting with her because she believes she is fine and doesn't need our help. I just found out today that I have a heart condition and my doctor says I need to greatly reduce my stress level. I said "sure doc, can you take care of my mother-in-law for a while"! How can I reduce my stress when stress is all I have these days?

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Top Answer
I understand how you're feeling. My mother has dementia and insulin-dependent Type 2. In the early days of caregiving, she was so combative. She was making a mess of her medications, but refused any help with them. My main emotions were frustration and anger. I had some silly ways of relieving stress quickly by shooting myself with my finger pistol. I don't know why it worked, but it did. I also went on walks or out to eat. I would go get some exercise or talk to people at the local senior center. All these little things helped a lot.

One thing that is very important, especially since you're married, is not to let your life revolve around her. You and your husband are number one, so you take care of yourselves and then include her care in your plans. If you can, hire a caregiver who can come in when you want to take a break or go on vacation. If you and your MIL come to know the caregiver in advance, your MIL won't protest too loudly.

If you can't get the stress down, it may be time to look for assisted living for your MIL. I know that it is a touchy issue, since it is your husband's mother. Caregiving can take a toll on our health if we're not careful, so talk to your husband about what you need to do. There are many options out there.
When i get really stressed out, i bake because it relaxes me. I also have a home gym with a boxing bag. I tried to grow a garden but didnt know what i was doing and planted 60 tomato plants and that wasnt very fun at all. Due to all the demands, i had to implement a few changes at the new year...im not cooking everyday anymore, people can eat leftovers, im not going shopping everday at 3 in the morning-other people need to be more organized. I think the best solution is to do something you enjoy
My answer is completely meant in a spirit of helpfulness.
You have to remove the source of the stress or remove yourself from the source of the stress. It is not more complicated than that.

Your heart condition is no joke and not something that can be put aside for another day when "things settle down". It's not a hang-nail or paper cut that can be ignored. My father died at the age of 56 from his 4th heart attack, due to stress at home and work. I lost my father at 15 because of these circumstantial things.

You have to be your first priority and I hope to goodness your health is also a priority for your husband. The problem with invisible illness is that other people can forget about it and behave as if nothing has to change or you can overcome it with will power and magic beans.

Having in-home care is a bandaid approach, but not what I would suggest as a permanent solution for you. Having a dementia patient in the house is stressful - even with help - because there is no getting away. You are in essence, living in a dementia ward that happens to look like your former home. For me, having personal attendants & nurses come in would only add stress to me. Only you know how you can handle that.

You have to plan for MIL as if you won't be there to continue care. What would your husband do if you were no longer there? Everybody's plan can't be that you ARE there until you drop.

It's time for mom to be evaluated by a social worker to determine what kind of care she needs. Don't place her for her need level today. Place her for her need level "tomorrow" and going forward because dementia only gets worse. She may behave better for other people - it's pretty common.

Mom wants to stay at home. I'm sure she does. But, that is no longer an option and wishing everybody was still 45 years old and healthy does nothing to make positive change. Your health is now taking a hit because of the current state of things. What mom wants may no longer be what mom needs, and she truly doesn't get to make those decisions anymore.

She/Husband doesn't want to spend the money. That's too bad. I'm sorry but there is no such thing as free care - even at home. You happen to be the one paying dearly at present. No perceived inheritance is worth that price of entry.

Husband feels obligated. There's therapy for that and it can be overcome. There are no laws mandating adult children have to take on full time caregiving at the expense of their health and livelihoods. Yes, they took care of us as children, but that is not in the least bit remotely like dementia care. I have a few choice words for the people who want to go down that road.

Your next step is find a dementia care residential facility and get mom moved in and signed up for whatever assistance she qualifies for. Your home must be your sanctuary. Your peaceful, harmonious, restful, quiet hideout from the world or you will beat mother in law to the funeral home.

Please come back and tell us how it's going! We are here to support you!

Thank you all for your suggestions and advice. In an effort to take some burden off of myself, I met with my MIL's new Medicaid case worker today to get her started with new Medicaid benefits like Skilled Nursing visits for her diabetes and to get more help with her care. My MIL doesn't live in our home, she is still living alone about 15 minutes away. Living with us was never an option she or we wanted. Which in some ways has made it harder. We have to drive over there constantly and call all the time. We have an aide that helps out about 6 hours a week but it's not enough. She is refusing to answer the door when the aide comes now. I can only imagine when someone new starts coming to check her sugar and give her insulin 4 times a day. My husband is very concerned about my health and I am lucky that I do come first with him. He is just very very confused right now. This all came in very sudden and we are her only family other than her brother who lives out of state. We just got her diagnosis last month and it hit my husband hard. I have been terribly worried about his health because he started waking up at 3:00AM with cold sweats and trembling. His BP has been super high. I had actually posted a question on the forum regarding how to help him through all this a few days ago, then BAM, my doctor dropped this heart condition bomb on me. This is also having an impact on our 20 year old daughter who still lives at home. She has been very depressed lately and seems to be holding off on her "life plans" because she sees how stressed and emotional we are. Basically the emotional, physical and financial burden of her care is putting both our lives in danger while she (the woman who has never done a single thing for either of us) sits in her apartment, shopping on QVC with our money, eating potato chips, completely oblivious that anything is wrong with her, and complaining to me everyday that the aide is driving her crazy. Today when the Medicaid rep asked me "Is your MIL's care effecting your health negatively?" and I answered yes, my MIL rolled her eyes. I thought I was going to kill her myself right then and there. I try to remind myself that she is ill and it's the dementia that makes her act this way but it still gets to me. I guess all I can do right now is wait to see if the extra services really help. We have decided to give it s few weeks and if not we have no choice but to move her to ALF.
Sandwich42plus, you are right! My husband agrees with you that we should come first. His fear and anxiety with all this has been what it is doing to our lives and our health. what scares him is that even in ALF her care will still be a constant responsibility in our lives and he (and I) feel like we never got any time for us. The second our kids were grown (20 &24) she got sick.
Caregiving is teamwork, and it sounds like you're doing the bulk of it.

Because planning is everything, start thinking in monthly installments. A big calendar where everyone can see it would be perfect. Label the entries as "ES" for Earth Shaking and "CW" for Can Wait. Squeeze in the name of who's going to do what ahead of time. Tasks must be doable, and the instructions clear. Otherwise people will start bailing out on you. The schedule must be realistic yet flexible. This goes for your husband too. After all, it's his mother.

Think of it as a military operation, and don't argue with crazy. You'll never win.





Oh, forgot one thing:

Cursing like a sailor when I'm all by myself makes me laugh. It's amazing the nasty words you can come up with in the heat of the moment. You'll never believe you had it in you. Give it a shot, but don't make a habit of it. Otherwise the occasional s__it, f__k, and d__n it will lose their magic.
It's so good to hear back from you! Thank heavens she's not in your home.
This is a tough, tough road to go down. But we've all been there/are there, and can tell you what we know from our own travels.

Your MIL is past assisted living.
She is going to need supervised skilled nursing/memory care with 24/7 supervision.
Assisted living is not going to have a dementia patient with any kind of behaviors. The staff are not trained for the type of care dementia involves past the very earliest stages.
AL is for people who need help dressing due to mobility issues, reminders, and a little bit of life coordination or help getting to the dining room. Not people who are unable to comply with verbal directions, are incompetent, and need more hours of close watch or wandering prevention. AL is not prepared to deal with the psychiatric aspects of dementia care.

Some ALs won't administer medicine, change adult undergarments, or feed the person. These are services she will need. You have to ask about these details to make sure to get the right place.

Just make sure you know the differences in the care levels out there and don't put her in a place that can't keep her. You don't want to live through all this again in a matter of weeks or months, or be told you have 24 hours to get her out because some behavior broke a rule on the lease agreement.

Medicaid will cover Long Term Care after they calculate her monthly spend down limit - the amount she has to pay each month.

I've been through this with my mom and I'm an only child. Your husband MUST talk to his doctor about his night anxiety attacks. I had the same thing. It was torture. I would go to work the next day and people would remark that I looked horrible. Well, I was horrible but I could blame it on something else in front of other people. I finally spoke to my doctor and she gave me a small dose of Xanex to use as needed. And I did. It made a HUGE difference. I only used about half the 30-day bottle, and that was weeks ago. Getting deep sleep was SO restorative. He does not need to suffer!

Mom never envisioned she'd live somewhere besides her home. She always said they'd take her out in a pine box, but we don't get to pick how things end up. Getting her out of her home was the best thing that ever happened. I did not perceive it as the end of the world or a disaster like a lot of people do.

Mom got better, more frequent medical care by being in a care facility. She got the psychiatric attention she needed by a doctor who specializes in geriatric psych & dementia. She got PT/OT, regular meals, and interaction with other people. She was getting none of this in her house. She also would not open the door and let anybody come into the house. That was not a sign of belligerence or stubbornness, but a sign of mental decline.
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Removing her from her "kingdom" changed the dynamics between her & all the people providing some kind of care. It wasn't all on me anymore. They helped me as much as her. If she needed to be seen by the doc for a new rash or something, they came to her, as did the podiatrist and dentist. I did not have to coordinate this, do transportation, take time off work, and deal with a 200 pound toddler all along.

My mom's changes in care needs were handled by the facility, not me. They would do assessments and conference with me about what/when/why/etc. They even moved her stuff into her room in the next unit!

Mom had some transition difficulty, but it's normal and everybody there knows how to handle it. She didn't behave for them like she did for me, and that's also normal. I'd get the whole big show about how horrible it was, get me out of here, they're trying to kill me, etc. These were signs her psych meds weren't quite spot on. She was fine and in no peril as imagined.

Bless you and your dear husband. Hugs and hugs and hugs.
You really have to let the care of her go to the person who is responsible for her. She will soon be placed somewhere. There has been discussion as to where she will go. It depends on the state and how their facilities work. A Memory Care facility will be able to tell you what services they provide and if state law allows them to administer her insulin. Based on her behavior, I would think that a regular Assisted Living would not be enough assistance for her. The big thing is for you to let go and let others handle the matter.

Based on experience, the only time I was able to relax and get a good night's rest, was after my loved one had been placed and was getting the care she needed. Once she is in a proper place, the only time you should be contacted is if there is an emergency. They will be the ones providing her daily care. Without that, I'm not sure of a way to relieve the stress.
Eddie, you really cracked me up with your "cursing like a sailor" method of stress relief. Unfortunately I have already worn those out so now I'm trying compound cuss words. LOL. Thanks for the laugh!

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