Any advice for a new caregiver?

Yes, this is going to take a toll, but she is 91 at this point . Do be sure to look ahead and make some plans for if and when you can no longer take care of her, and that time may come. Try to make sure you plan some "us"time.. and good luck!! Also keep up your job skills, as you will want to go back to work I would imagine, and build up some money for your own elder years.

Do you plan on having children? You won't be able to while caring for your grandma . I'd consider this as you are all ready in your 30's . If not then go for it if you and your husband have made the decission together to assist in this way.

She could live for another 10 or twelve years.

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.

You should hire other caregivers to help out otherwise your marriage will suffer - and most importantly - you will suffer. It doesn't matter how close or not close you are to the patient, caregiving is a major stress on the mind-body-spirit. Dementia alone is awful when it's progressing but the combination of diabetes and dementia is not a pretty picture. Poor blood sugar control will affect her mind, like causing extreme agitation, confusion, and urinary incontinence (which also are symptoms of dementia so you've got a double whammy here) My mother is now experiencing this as part of her decline. The poor blood sugar control just makes the dementia screaming worse. Every day I thank whoever invented ear plugs.

You have already moved into GM in laws house which is going to be more difficult for you to get out of.
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.

"I feel like we're putting our own life on hold a bit. . . 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. "

Read back over your own words and let the reality of these statements sink in.

Oh dear! This is going to take a huge toll on your life....oh yes. And...when it is finally all over...the price will continue the rest of your life!

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

Who else is involved with your husbands grandmothers care? Do you take her to her dr appointments? Are you listed as a person that the drs can speak with? Do you have her DPOA? Does she have a DNR? If there is a promise of leaving you her home, do you have a copy of the will showing that or has a legal document been prepared? Perhaps you are being paid. What happens when you realize you can't go without sleep and need more help? Is there money to hire help? Are you in a position to even ask about these questions? At 91,regardless of how she is doing, you know that it could all change tonight? Right?
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.

Please don't give up your job. You need to take care of you too.
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.

I was only able to care for my LO in the home for a short time, as I was self employed and couldn't just stop work, however, I know what I encountered during that time with a dementia patient who has diabetes. All, I can say is that please read the suggestions above. It's really a huge job that is physically and mentally exhausting. Things change as the dementia progresses.  I'd keep in mind that except for the early stage, dementia patients cannot be left alone in the home for any length of time.  That's a huge burden for a newly wedded couple and will drastically effect your lifestyle. 

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.

Where did this "selfish brat" thinking come from?

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.

What is in this for you? Nothing! You have no idea how all consuming this job is. It will suck the joy from your life & exhaust you. I would run away from that situation as fast as my legs would carry me!

Most (all?) of the answers so far boil down to "Don't do this." I concur. But if you are going to do it, here are some points to consider.

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!

Life is full of all kinds of challenges and blessings, it is what we do with them that shapes us. You need to be sure to make time for the things you need for yourself and time to cultivate your relationship with your husband. That is different for each person and couple. You can meet this challenge and grow or it can crush you. You need to be able to determine if you can do this, it is not for everyone. Look inside yourself and then make your plan with your husband. If you need to work for your own sanity, hire a caregiver. All can be possible, you just have to figure out how to make it work. I care for my mom, stage 7 Alzheimer's. I work mostly from home. When I have meetings, my husband or my adult daughters come. I have my grandchildren come and hang with me, lots, which is for my sanity. I don't leave the house much except for a work meeting so my family comes here. You need support from the entire family and friends. Invite others, find ways to make it enjoyable. When mom was earlier on in the progression, we went out, shopping, for walks, to the zoo, aquarium, etc. As with all aspects of life, it can be a blessing or your demise...with support choose to find ways to make it a blessing.

What sort of full-time job are you quitting?

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.

Don't do it, especially because you are so young and just beginning your marriage. My husband and I have been married for 48 years. We moved his 93 year-old Mother in with us several months ago. She has severe dementia, is confrontational when we ask her to take a shower only 2 days a week, etc. We previously had her at an amazing Retirement Community, but she refused to participate in any of the many activities that were available. The stress of being her 24/7 caregiver has not only affected my physical and emotional health, but has put a tremendous stress on our marriage. My advice is to find an appropriate residential community for her immediately! It will be best not only for her, but for you and your marriage, as well. Please don't delay in making this decision!

It is a lovely thing to do for your husbands grandmother, however, you need to think of yourself, your husband, your marriage also. What about other extended family members like your husbands grandmothers children, if there are any? The grandmother could live another 10 years and also, when caring for an elderly person, there is no let up, it is 24 hours a day. Think of yourself, all the best, Arlene Hutcheon

I like what katiekate said, "Tell you what...ask hubby to quit his job for years to do this." I agree. There seems to be so much for you to lose -- and she is not even a blood relative! Ask your husband to put aside his career to care for her. You are wonderful to be willing to help -- and for that you should be given a medal -- but in all truth, she is HIS grandmother. It's harder for a woman to get back into the workforce after an absence than it is for a man.

Stephanie, I hope you'll come back and update us. You've been given lots of food for thought.

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?

I commend you for your charitable and loving intentions....However, DO NOT do it...Get her into a nursing home with a memory care unit...You cannot imagine the physical and emotional impact this will have on your life.. I have done this for two years...I earned a heart attack for my efforts. The initial satisfaction I gained from being a gallant spouse soon melted down to nothing..I was not resentful or even angry....I WAS tired beyond imagination. The tiredness still has not left me after many years.

Grace + Peace,
Bob

Fabulous advice here. Yes, please update.

You don't sound like a selfish brat, but I hope it's not too late for you to reconsider keeping your full-time job and hiring a caregiver. Going ahead with your plan will not only take a huge toll on your personal life and your marriage, it can affect your future if you are cut off from any benefits you receive from your job. If you live in the U.S. you will decrease the amount you will have paid into Social Security. I am retired and am glad I did not quit my job when my mother suddenly became my responsibility. I made arrangements that were fair to her and to me.

If she's like 90's, she will not last that long anyway. If you truly hate your job and want to quit, do it. If she is younger, you may want to reconsider.  Hiring caregivers cost a great deal of money--sitting services alone (without any hands on) is $20 an hour. A CNA which does bathing, changing clothes, feeding, that's double that.  If she has medications to administer, you need to hire home health and that will cost another fortune because a CNA cannot legally give any kind of medications.  If you want to keep your job put her in a nursing home. If she is on Medicaid--they will pay for adult daycare but when she dies Medicaid will want reimbursement and will go after her estate since she is over 55. If she is on Medicaid and you want to keep your job impound her in a nursing home. 

You could do it -- she's 91 and won't last long anyway and if you have a support system.  IF she were younger say in her 80's--this is how it's like to caregive for years.   If she is end stage Alzheimer's caregiving will suck the life out of you. It's beyond a nightmare. You will need incredible amounts of patience. Ask yourself if you are able to bathe her.  If you have a bathtub and she is able to walk, you better get rid of it. That's what I had to do because sometimes they will try to go in there and CANNOT get out.  I had to pay considerable amount of money changing it to a standing shower so she can't drown herself.  Are you able to clean her private areas because she will urinate and defecate on herself--and if you don't they can get infection.  Are you able to brush her teeth and be prepared to become the target of anger.  People with Alzheimer's absolutely HATES anything to do with hygiene and you still have to do it and they can fight you--you need endless patience with them.  Unless you are wealthy you will have to sacrifice your own health and seeing a doctor to caregive. My Obamacare is $600 a month with $7,000 deductible because Florida does not provide any kind of Medicaid expansion and since I make virtually no money I'm not eligible for any kind of government subsidies because I still have a savings.  My savings has taken an enormous hit because living is expensive.  Car repairs. Air conditioning repairs. Dentists. Insurance. Home insurance. Flood insurance. Car insurance.  Life.    Despite having health insurance I have not seen a doctor for years due to the deductibles.  Caregiving will severely impact your life.  Oh and if you think your doctor has a magic pill -- forget it. Nothing cures Alzheimer's. Those pills may mask symptoms at first but they become ineffective and psychotrophic and sedatives will increase risk of FALLING. 

So your husband, her grandson, leaves the house to go to work every day? He most likely expects dinner every day? Does your husband do the grocery shopping, laundry, help with cleaning or do you do all of the above in addition to caring for Grandma? Hmmm

I have been caring for my 92 year old mother who has dementia/
alzheimers for 1 1/2 years and yes it is difficult but with God's help I'm able to handle it pretty well. Make sure you take care of yourself and take daily respite breaks. If possible I recommend you put her in adult daycare several days a week. I get a lot of support from my pastor and church family. I've been going to a caregivers support group once a month and am going to join a dementia/alzheimers support group (my first meeting will be 4/17).

DONT DO IT!!! I am 36 and my husband's gram moved in with us (dementia,seizures,brain injury) I have no life can no longer do most things I enjoyed doing with my girls 5&11 the family barely helps and my husband thinks it all cake and ice cream so long as Grammy is well cared for and she is but at what expense? My freedom, my kids, and well my kids?!? She's gotten physically and verbally abusive toward my kids and me both. This will not get better only much much worse with dementia. Are you prepared to give up life as you know it? She will decline and mabe now she will be or is grateful but after her mind is gone you will be changing diapers or mabe just scrubbing your toilet 6 times a day because she is too proud to let you help or as in my case broke her wrist from falling and can barely do it herself and still won't ask for help and tells you your a c***sucker for trying to shower her grateful no more my dear. It has been just over a year now and I cry alot it's alot to take on emotionally more than anything else in my opinion and it will take a toll on your marriage for instance say the day comes when shes gotten physical and your hubby comes home from work and you tell him about granny taking a swipe at you not everyone realizes how far out there ppl with demntia get so what do you do when he says well what did you say or do to make her do tht? Yea not a good idea unless u already have ppl to fill shifts and family actively helping for the love of God do not do it. Have kids their way more fun.

I don't hear you saying your husband will be taking care of his mother. Isn't he going to be helping?
24/7 means no sleep - you won't last long. If it's his mother, you should be helping him take care of her - not you doing all the work.

Before you quit your job, sit down with "dear hubby" and ask him exactly what he is expecting of you and what he will be doing for all 3 of you. Ask him who will be cooking, bathing, cleaning & changing depends, feeding (yes, I said feeding) HIS mother. Get it all out on the table or you will be in a world of hurt down the road.

Being a caregiver can be extremely rewarding - but it can also be complete h*ll. Knowing what is expected of you will definitely help you.

You do know he will still expect you to clean the house, do the laundry, prepare meals and "service him" when he is in the mood.

My heart goes out to you and here's a question for you where are your parents in all this? You are a young newly married woman that should be getting used to being married. I am also caring for my grandmother as well and I am 41 years old and in a serious relationship. I barely get time to spend with my boyfriend and you need to be moreso looking out for your marriage. You will start to get worn out taking care of an elderly person because in a few months you'll see how this is taking its toll on you both personally and financially. Seniors can be expensive and if you are planning to start a family in the next few years you need to make some arrangements so you can ensure grandma is cared for while you live your own life.

Don't quit your job! I stopped working for 2.5 years and this was my biggest mistake. I'm working part time now. I wish I would've brought caregivers in as soon as I needed them instead of stop working. At the time it seemed like a good idea. The problem now is that my mother clings to me because she is so dependent on me. It's sucking the life out of me. Dementia only gets worse, don't ruin some of the best years of your life. It is rewarding on some levels but in the long run it will harm you. Get caregivers now!