How do you cope every day??

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How do you cope every day??

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Mom (91) has been living with us for 15 years and Dad past away 10 years ago. She has many medical issues and will not listen to her doctors concerning medications etc. My husband At 70 years old has heart problems, cancer and they both have beginning Dementia. I work full time and have our daughter and 12 year old grandson living with us and watch my 7 year old grandson 2 days a week. My stress level is threw the roof but have no time to see a doctor. How can I cope????

Alzheimer's & Dementia Burnout Sandwich Generation Stress

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I read your previous posts. You are under a LOT of stress.

Why can't your mother go to a facility?

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Totally agree! If we don't take care of ourselves, we will be of no use to anyone. What happens to our loved ones if something happens to us?

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she was in a rehab. They sent her home and the doctor said she didn’t need to be there. She has always been impossible to get along with Dad gave her everything she wanted. She pouts and right now isn’t speaking to us because she didn’t get her way. I can only imagine how she would treat others

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Who cares how she treats the professionals. They are trained to deal with the behaviors.

My parents are both soooooo lovely with others, they save all their nasty for family. Maybe your mom would be the same.

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Dear "blondie97,"

Your cup is not only full but, overflowing. You can't possibly continue to handle all of these situations without some sort of help or your health will suffer immensely and you won't be able to take care of any of them.

I know you want to help your mom but, your husband desperately needs you along with your daughter and grandsons.

Please reconsider putting her in a care facility where they are not only trained to handle her physical problems but, her behaviors as well. Do you think your mom would be the first one they have had to deal with when it comes to not getting their way, tantrums, refusing to cooperate? I'll answer that - it's a resounding "NO!" Why? Because it is so common with elderly people to have mood swings, be uncooperative, combative and for a whole variety of reasons - pain, wanting to be more independent when they know they can't be and some who simply have always been allowed to get their way. Let them handle it while you continue working your full-time job both career-wise and within your home taking care of your family.

If that doesn't convince you, how about this - back in 2015 when we moved my mom into an AL facility after being diagnosed with Alzheimer's, clearing out her house and storing some of it, selling her house in order to make her rent payments I had severe pain in my temples. After going to the doctor, he immediately had me get bloodwork, a brain scan and sent me to a Vascular Surgeon all in one day. The next day, I was in surgery - if I hadn't, he said I could have died from a massive stroke or go permanently blind and I was only 53. My cortisol levels were so high (that's what happens with high stress) that I was put on a very low dose of a chemotherapy drug used for patients with Rheumatoid Arthritis after being put on steroids that I couldn't tolerate. Prior to that medication, I started feeling like my insides were on fire all the way up to my chest, esophagus, throat, mouth, lips and the inside of my nostrils. I had a specialist do a scope down my throat and he found nothing! I had something I never, ever heard of - Burning Mouth Syndrome. It was pure hell and agony. So how do I cope, I know some will disagree but, I had to take a small dosage of anti-anxiety medication. Then I added 30 minutes of exercise that I actually enjoy doing and if I don't have time to do the full 30 minutes, I'll at least do 15 minutes and then I listen to instrumental music that is calming.

Also, my mom did not want to move out of her house but, she adjusted. Was any of this easy for any of us? No, but she's getting a type of care that I could never give her as I'm not trained. After nearly dying in April from severe dehydration and COVID, we moved her to a new facility into their memory care wing. She can no longer walk, lost 20 lbs. and doesn't eat much so she has hospice care. She is doing really well considering everything she went through.

So please take heed, before something happens to you because if it does, then what? I hope you will give us an update as to how all of you are doing!

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Wow, how scary for you back in 2015! Cortisol can do bad things -- our bodies weren't meant to be in a constant state of stress.

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Blondie97, something has to give. It sounds like it may be time to place her in a facility. There is just no way to do all of these things and still give mom the care she needs- physically and mentally impossible. We are only human and can only do so much. As a caregiver, is it not selfish to take care of ourselves- it is crucially important! Otherwise what happens to our loved ones if something happens to us? You sound beyond overwhelmed, and who could blame you? It may be time to ease some of the burden off you.

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My goodness. You sound just like me! I put myself last so many times, and tried to be the strong matriarch that I developed cancer from it all! My doctors said if I didn’t change my life and stop all the stressors that the stress would just take me. What a wake up call that was! How do you change? I had to draw up boundaries and force myself to let my daughter and grandson take responsibility for themselves. They now live on their own and my daughter got a good job while she applied for child support. (She still has the job). I was able to speak to my mother’s PCP and he got her on hospice. (She’s been on hospice for 15 months so far). They helped so much and I was able to let go quite a bit while I did chemo. My doctors wanted me to put her in a NH. When I knew that would be more stress than I could ever handle because my mother would never go willingly, I had to be grateful that hospice was able to help as much as they could. (Until covid). But my mother doesn’t live in our house. She does live a few doors down from us. I handle everything for her at 94 yrs old. She is legally blind and can’t see anything at this point. But as long as she is managing in her home, she will stay there with hospice help. If she starts failing more, she’s going to our beautiful hospice facility. Nothing will stop that.

Every so often things get stressful again between us all and I have to draw the boundaries up again. They test me, but I can’t cave. And my husband is going to be 76 yrs old and he is showing signs of decline. He sees doctors in almost every field now who are trying to help him, but his blood work is awful (kidney disease) and his sugar is sky high! (Bad diabetes). He won’t eat right. It is pure insanity sometimes trying to stay calm. I can’t be the food police as I tried and it was horrible! I’ve been a caretaker for my immediate family for 10 yrs now. They’ve all died except for my mother. Caretaking is no joke and I don’t wish it on anyone!

Please take a step back and see how you can make things easier for yourself. You will make hard decisions and one you won’t be comfortable with, but it must be done. You deserve a healthy life! Don’t fall into the trap and be a martyr. You CAN’T do it all! Love and hugs to you.

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Somehow, some way, you MUST get some respite on a weekly basis at least..I am suggesting at least a paid helper to come in for a few hours on your day off work, so you can just get out and have a bit of free time, enjoy a meal at a nice restaurant, go for a leisurely country drive, stop for an ice cream Sunday , you get the idea.

I suggest these because I cared for my invalid, massively handicapped wife at home for two years and twice a week, for four hours each time, I had a paid lady come in and take care of her. The relaxation was wonderful...The knowledge that I'd get a bit of respite again soon was soothing..

May God bless you richly,

Bob in North Carolina

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Your health is just as important as everybody else's. Seems you need a little time off: daily, weekly, monthly... Start by figuring out what you need so you can optimize your own health. I would suggest that your daughter watch everybody at least 4 hours a week so you have some time to yourself. You also need regular, healthy meals. How about 8 hours of uninterrupted sleep? If you're not getting the basics covered, you have no resiliency against stress. Make changes. Get help: family, friends or paid. God bless!

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Hurry right now to get some paid sitters. You need to take care of yourself first otherwise you will not be able to care for your family. If mom is non compliant it may be partly due to her dementia, maybe not. Is assisted living, memory care or long term care a consideration for mom? My dad lived in his own apartment with my mom but during his last months had daily everyday home care. I care for a 91 year old aunt( in her own home) but she also has home care 7a-7p daily. Part of the week I keep my grandchildren which keeps me sane. Anyway you have got to have help. I can personally recommend Concierage Care for CNA care. We have been very pleased with the quality if their staff.

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How is it that you are the only one that can watch your Mother and grandson? Something’s got to give. Since your grandchildren obviously need you, it’s got to be your Mom that goes.

Your husband is getting worse, are you going to take care of two people with full blown dementia? Or one with cancer and two with dementia?

Your duty is to your husband and children, then your grandchildren, your Mom comes last.

40% of caregivers die before their patients, are you aware of that? The stress kills them. You would be a prime candidate because you have taken on the jobs of about 4 or 5 people. Please seriously consider lightening your load. Your health will thank you it, so will your family when you’re still around 5 years down the road.

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Imho, it is IMPERATIVE that you take care of yourself STAT, e.g. through respite and also to get yourself to your physician, else you fall faint and ill and will be good to no one. Ignoring your own health by not seeing your physician is just one of the factors that is in your control. Actually the other factors are in your control, e.g. your mom could find facility living and your daughter and grandchildren find other living arrangements. You CANNOT nor should not do it all.

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You are so correct in your answer. I am seeing myself go downhill faster than an olympic skier. Caring for mom until she passed in 2018 even though she was in memory care then skilled nursing for 2 years took a toll on me. I tried to take care of her empty home, take her to her personal doctor, do her laundry, take items she needed replaced due to others taking them and visiting 1 to 2 times a week which meant driving 55 miles round trip. And then surgery 2 weeks before she died while also trying to care for my husband who had been diagnosed with dementia and onset alzheimers. Another surgery 2 days after Christmas and 3 weeks after first one. I came out of it with most of my colon gone from cancerous growths. Now, I see my short term memory disintegrating. And I still have to care for my husband who spends 99% of his time either in bed or in his recliner in front of the TV. He no longer drives, barely can walk, has to have help in and out of tub, etc.
Blondie97, listen to everyone who tells you to put your mom in some type of home so she gets more help and try to get your daughter and grandson out of your home. You deserve a rest, a vacation, a space of time for yourself. Please, don't feel guilty, you count too.

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I see three of your stressors that can mitigated immediately: your grown daughter and her 12 year old son who live with you, and the younger grandchild whose parent(s) lives close enough to you to expect baby-sitting duties.

The grandchildren have parents who are responsible for them. You are not responsible for their children's care. Your adult daughter should be lightening your burden. You didn't mention if she works at all, but if she isn't pulling her weight in your home, then she needs to make other living arrangements for herself and her son. At the very least she could watch her 7 year old nephew 2 days a week and give you some breathing space.

Your mom needs to go to a facility ASAP. She is not your sole responsibility. You don't mention if you have siblings or how your mother is set financially but it's past time to sound the alarm.

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I haven't had a chance to read all the posts, but for me it would be a relief to be able to work and get away from my situation any number of hours per week.

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Parents of the 7 year old need to find another day care...unless you are currently doing this only because of covid. Can either of them work from home right now? IF so, they need to do that and get the 7 yr old back in their own home. It's too much for you. Are you working FT from home? If you are leaving the house each day, is daughter and 12 yr old taking care of elderly parent and the 7 yr old? You're only way, at this point, is to figure out if there's any thing you can remove from your plate.
Any siblings who can come and give some relief? Do you have any other grown children that can come in to help. What about finances - is there any money to pay for in home care to give you a break? Consider anyone and everyone when asking for help. You seem to be helping one or more of your own children with their children. I bet you're not getting paid either --- so get them involved in the care of dad and grandma on their day off. If they're off on the weekend, they can come on Fri and bail you out until Sunday evening so you and your own daughter can spend some quality time together outside the house.

Make a list of mom's meds and when she should take them and tell her to get on track with it. If you need to put them in daily sorted boxes, do it. then you can see what she's not taking. One of the kids in the house, with cell phone or tablet, can set a daily reminder to tell her it's time to take them. Good job for a kid and she might do it for them.

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I am so sorry. You’re obviously a very caring person. You have more to deal with than any person should have to deal with. My situation is similar. Get cameras for your home, so you can keep an eye on things from afar, lower your expectations — they will survive without you — and take a day or two to yourself, even if it is part-time.

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You need to clean house!

1) Mom needs to move to a facility where she can be cared for. It may take another incident where she goes to the ER and at discharge time you need to stand your ground that you can no longer care for her.

2) You can no longer take your 7 year old grandson 2 days a week. You would be happy to have him visit WITH his parents when you are up to it.

3) Daughter and 12 year old grandson need to make other living arrangements. Give them a move out date.

Now breathe and take care of yourself and your husband. Look into caregiver support. Good luck.

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The daughter and grandson who live with you should be helping a lot with cooking and assisting with your mother getting her up and down and up and get her to the doctor etc. they should be helping a LOT! A 12-year-old boy is capable of doing things to help.

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You are a super woman, but you have to accept that you may not have all of the super powers you would need to handle this situation. When a person gets dementia it is likely to get worse over time. And the person can go on declining for years. Perhaps it's time to look for an assisted living facility for your mother. At some point, it may also be needed for your husband. The other alternative is to line up aides to be with them if they get to the point where they wander, or do crazy things, or can't take care of themselves. Be sure that you have all paperwork in order for her and your husband (POA, medical directives (living will), will, etc.). My mother agreed to making her bank accounts joint, with me on them. This makes things easier. If your mother has a charge card, you can be a second person on her card, (but you don't want to be a second person on her account). Elder proof your house for your mother and husband (lock up sharp knives, scissors, and hopefully they are not into cooking). You may have to unload some of these responsibilities so that you can focus on what is most important, and also have some time for yourself. Take care of yourself, as you are the one taking care of everyone else.

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