My name is Stephanie and I have recently taken on the role of sole-caretaker for my husband's 91-year-old grandmother. She has diabetes and dementia, but is pretty sharp other than that. We moved into her home a couple weeks ago just so we can be right there with her. I'm 30 years old and just married my husband last year, so I feel like we're putting our own life on hold a bit. Any advice for me? Do I sound like a selfish brat? I'm quitting my full-time job so I can provide her with 24/7 care and I really feel like this will take a huge toll on my personal life and even my marriage. Any advice is appreciated!
Grace + Peace,
Bob
I think the backstory matters here. In other words, has grandma just recently showed sharp decline, everyone is panicking, and your husband, being a people pleaser, said
" don't worry, Steffie and I have this"?
(Decisions made in haste and without all the facts are usually bad ones).
Or are your in-laws absent, incapable or self absorbed and can't/won't be responsible for arranging grandma's care?
If it's the flipping burgers type with no benefits, no health care, no prospects, no security, no training opportunities, no social side and two-thirds of f***-all in the way of wages, then this might be a reasonable option. Until you can find a route into something better.
Otherwise, you're out of your mind. Do you even have any of the skills required to provide 24/7 personal care for a lady with diabetes and dementia? I'm guessing not, because someone who says that 'apart from the dementia' a person is pretty sharp...
I don't think you have a clue what you are letting yourself in for.
1. Right from the beginning have a respite plan in place. You absolutely will not retain your sanity doing care 24/7/365. You have to have time off during the week, at weekends, and for vacations. This is critical. Without this considered seriously from the beginning you will crash and burn and probably your marriage will go up in flames too.
2. Get paid. If GM can afford to pay you market rates, great, that is what you should charge. But even if all she can afford is $50 a month out of her SS check, take it. It gives her the dignity of paying her own way, and it gives you a little something to remind you that what you are doing is worthy. Have a formal care agreement in place. It will be useful if she needs to apply for Medicaid.
3. Get paid now. Looking forward to an inheritance is not the same as getting paid.
4. Assuming GM doesn't have much more than her house and SS check, apply for Medicaid now. They do cover some in-home care, all deductibles on drugs, and have other benefits for a person still in the community. And if the time comes when GM needs a nursing home, the Medicaid coverage will already be in place. (Disregard this point if GM has lots of assests.)
5. Do NOT ever promise that you will never let GM go to a home. I didn't even promise my husband that. I promised I would never abandon him, I would keep him at home as long as that was the best option for his care, and I would always be his advocate. I repeat, do not promise she never will be placed in a care center of some kind. You never know how and how fast dementia will progress. It usually reaches a point where it can't be handled by family members at home.
6. If you are a professional, stay in touch with your industry. Attend the monthly professional association meetings. Mingle. Network. When asked where you work say, "I recently worked at XYZ. I'm taking time right now to care for my Grandmother, but I expect to be back in the workforce within a few years and I'm keeping current on developments in the field." Stephanie, is there any possibility of doing some work at home in your field?
7. Join a caregiver's support group. Ideally find one specifically for people caring for someone with dementia.
8. Maintain your own health. See the dentist on schedule. Get your flu vaccination. See your doctor on the same schedule you would have if you weren't working 24 hours a day. If new problems arise (depression comes to mind) get treatment!
9. That respite plan I talked about? That is not for grocery shopping and running errands. Use it to take a class in your field of work. Frequent date nights. A matinee movie or concert. Plan for respite and use it! (If Medicaid provides some caregiving hours, that can be used to provide your a little time off each week.)
10. Enjoy having this little old lady in your household! Create moments of joy for both of you. Do things with her up to her capability limit. Play cards -- even if it has to be Go Fish or Old Maid. Laugh at a funny old movie. Let her scrub vegetables while you prepare dinner. Get her to dictate a brief story of her life, type it up on the computer, and print it out. Read it together once in a while. Go out for root beer floats for breakfast. Visit a garden center and admire all the flowers. Your treats and outings don't have to be expensive -- they just have to joyful! Realize that if she were in a nursing home she would have opportunities for entertainment and activities a few times each day. You probably can't match that, but do consciously provide some pleasant stimulation.
I really think this is the wrong time in your life to be taking this on. This is your season for building your career and, if you decide to, starting a family. But if you are going to do it, also take care of yourself and build as much joy into this arrangement as you possibly can!
It looks to me like your husband and his grandmother has found free care in your quitting your full time work to care for her which does not sound fair.
Where are grandmother's children? Why aren't they helping in some fashion with her care?
I think that you need to have a heart to heart talk with your new husband about this and stand up for yourself.
I'm not sure what stage your grandmother-in-law is at, but, eventually there is around the clock on hands care when they become bed or wheelchair bound, incontinent, unable to feed themselves, etc. I'd read a lot about the progression of dementia.
Does she have funds to pay for outside help to come in to help you? I'd read here and other places online about what others who have tried what you are planning and see how they have fared. It's normally not good. Most of the time, family members with good intentions are exasperated, exhausted, overwhelmed and trying to figure out how to get themselves out of the situation. I suppose they don't believe what they read before they make that commitment.
Plus, I'd really consider if you want to leave the workforce at this time in your life. It's the time that you will be the most productive, network, grow in your career, add to retirement, etc. I would explore how you might work, but still help grandmother-in-law. There are options that enable you to do both, with the hands on care being done by professionals. Some bring caregivers into the home others, find placement for their LO in Memory Care, AL or Nursing home, depending on the level of care they need.
If your husband is anticipating an inheritance and this arrangement is about that, I'd have an attorney take a look and get a professional opinion.
You are not a selfish brat at all and you are putting your life on hold, or worse - taking on an almost impossible task that will seriously negatively affect your life. Please rethink this and the care of grandma. Discuss other arrangements for her care with your new hub.
Do you know her A1C? What her medications do for her? What her diet should consist of? It's difficult to give you advice without knowing your position, your responsibilities and your expectations. Having asked all this (and believe me We could all ask many more questions) I wanted to add that
I did something similar. I was in my mid twenties when my husbands grandmother came to live with us. I had two small children. I think I only had her for about six months. She had been living with a family as a caretaker. She got sick and needing care herself, we offered her a home. I had met her a few times at holidays. She was very sweet and tiny and seemed really old to me. I think she was in her mid 80's. One day she started calling me by a DIL's name. She had had a stroke. My MIL and her sister decided she needed more care so she was placed in a NH. They were concerned she would be too much for me with my two small children. I remember my time with her with great affection. We called her "Little Mama".
I had a younger brother who was dying of cancer. He would come over And pick us all up and take us for a ride. It was so sweet. We were such a funny little group. He died at 19. She died a few years later.
She didn't have diabetes. She probably did have a touch of dementia. This was a long time ago so some of the details are fuzzy. Keep coming back to this site. You can learn a lot here and it can all work out but at 91 anything can happen. As sharp as a persons mind might be, the body wears out. Not many live to be much more than her age but some live to over 100. Do the best you can and know that you can change your mind. Don't spend her money without very good records. She may need Medicaid to pay for a NH and you wouldn't want her to be denied benefits because it looks like she gave all her money away. If she is going to be paying you, have a care contract drawn up that specifies what you will do for your payment. This will help protect both of you. She may know how to handle her finances today but not know tomorrow. Understand that although you could spend many years caring for her, she could be gone very soon, so your job (and home) could be very temporary.
This are the years of your highest wage potential. You not only lose the wages of these years...you lose the wage increases...you lose the years of experience in your job...you lose the retirement funds, you lose the social security benefits. Years from now you will realize you didn't just put your life on hold....to a real degree you sacrificed your entire future.
You do not get any "do overs" in this life. By the time you see how huge the price was for you..it is too late to undo the damage!
And...your marriage will likely suffer a great deal too. Tell you what...ask hubby to quit his job for years to do this...bet you flat out refuses! Know why? He knows what a lousy future it would mean
Then...when you get divorced (odds are not good...be realistic). You lose again. Hubby has his entire employment history and salary increases intact...you have no recent experience and no savings.
Ok...that was the lecture.
Here is the advice
DON'T
Read back over your own words and let the reality of these statements sink in.
If you had not already moved in I would definitely say "Don't do it"
You are not being a selfish brat you are being sensible thinking about the downsides before you gets sucked in too deep.
You will need three full time caregivers so no one works more than 8 hours. You will also need people to cover days off etc. Do not make the mistake of taking the night shift under any circumstances. You are newly married and that will be the time hubby is home and it is essential you spend that time with him.
I would also not recommend giving up your job either. A promise to leave you the house will be worthless when the absent relatives come out of the woodwork circling like a bunch of vultures.
I realize my answer is not warm and fuzzy but I do aplaud your decision to be prepared to take on this task. Do not make any promises you can not keep. Most people find the financial stress will also be great. If GMA had funds you would not have been tempted into this situation. So if medicaid comes into the picture the house will have to be sold to cover her expenses. There really is a lot to consider.
You sound like a level headed young woman who thinks she may have been sold a pig in a poke. You have.
Why on earth would you give up employment to care single handedly for someone with a progressive illness that has no charted trajectory?
Dementia patients need three shifts of caregivers. Read through the threads here. Make an informed choice.
If nothing else, make sure you have a caregiving contract so that you are being paid out of her funds. No " oh, I'll leave you the house". Medicaid estate recovery will get the house unless she is
generationally wealthy.