Any advice for a new caregiver?

GET A CAREGIVER'S CONTRACT - this is your new job - you get time off [other family members have to pony up for your stated 'off' time or pay for help] - this includes vacation & days off [which can be accumulated for additional days off] - this includes time off - so for example .. your sister-in-law knows that she covers every Thursday so you & hubby can have dinner & a movie & include a penalty so allow 3 times a years [to be fair] that it is changed/cancelled but rescheduled but beyond that they pay for extras - you also should get 2 weeks paid holiday [you get the pay you would have got if you weren't on vacation] when you are 'covered' by someone else [after 5 years add 1 week & after 10 add 2 weeks]

You are not a slave nor an indentured servant rather you are the 'caregiver' - get $$$ & pay taxes especially so you can show employment for when you go back to workforce - put it all in your maiden name so that your future references will be from family members with another [your married] last name

Open a retirement savings account [depending where you live there are different names] & then add something every month - this all will give you a leg up when you go back to work as you will have a continuous employment record - this will protect your butt in a long way

Congrats for undertaking this but keep rest of family to their commitments - you are not on an island with just you & your grandmother-in-law rather you are helping your husband's family when they need it & you should get brownie points over & above any money you may get - I know there will be times you will step up outside of 'your contract' [maybe keep track of this if you want] which is kudos for you -

You must truly have a generous heart to take this on - however realize that your generous heart is one thing but unfortunately she will pass on well before you so you need to maximize not only your position but your husband's & family's - also make provisions about should you get pregnant & how that will be handled in any contract - for example could you take an infant to her place AFTER MATERNITY LEAVE or will they pay a % of day care for a toddler?

We all have posed questions that our accumulated experience has made us answer so that we collectively can protect you as much as we can but in reality you are the person who needs to stand up within your husband's family - also you posted concerns about how this would affect your marriage so protect yourself

I just needed to go to bathroom - I sat for nearly 10 minutes longer knowing that this time was mine alone [& you will know this at a later date] & except that I wanted to finish this I would still be there - this is how tired you will get but you are younger than me so you might also add some resentment to the mixture -

Be prepared & stand up for yourself when his family says anything negative - FYI take their names as I feel that they just volunteered to help if they say anything negative - so whenever someone disses you need to say on first time that that means they are offering to help, pull out pen & paper for contact & say that they are on list to cover your 'days off' - if that doesn't shut them up then you have 'back up' - if they don't follow through then say in front of family at a later time 'why didn't you help when you said you would' - you are the caregiver not the family 'patsy' - good luck

Cwillie, it's true. It's like a frog in a pot of water that slowly heats up until the poor frog realizes he is in boiling water. It just gets worse and more time-consuming and expensive and awful. (for us, not necessarily the frog.)

"We all go into this in a rosy pink glow of good feelings, and all of a sudden we are immersed in the red flickering flames of h-ll. "
LOL I think that is brilliant!

Wow. Good luck! We all go into this in a rosy pink glow of good feelings, and all of a sudden we are immersed in the red flickering flames of h-ll. "Oh, mom, gramma, dad, grampa - they just need a little help! Why, they are still sharp as can be! They're members of the family after all..... It won't be THAT bad! After all, I will be home all day and just have to look in a few times....." Unless you live in a swamp down south where this kind of Waltons thing is a matter of course, you will regret it. The good news is, she is 91 and the clock is ticking (do not jump on me for saying that, you all know it is true). You will need caregivers coming in to relieve you. Get that paperwork in order thru an eldercare lawyer (durable power of attorney, living will, etc.) ....I had to shuttle 20 miles every day back and forth to look after my mother, leaving my family on hold, there was no one else, and I had to navigate caregiver agencies, home health aides, doctor appointments by the score, Medicare, Medicaid. House almost set on fire till I took the knobs off the stove. Stairs to be blocked off. Hopefully she doesn't get a foot-high stack of mail from charities and scam artists every week.....Oh, please read all these responses. We all want to be 'good people' and do our best, but really, this can just kill you.

First of all, hire caregivers...then have Elder Lawyer apply for Medicaid Home Care...get cameras & go back to work. You can come & Supervise. At 91 this is not a long term position but you can get very stressed if you take this on yourself alone. Husband will not quit his job. Why should you!? Take Family leave but don't quit

I think it is highly important that you think of YOU. She is 91 and could live for years and we don't know in what condition. I suspect within the next few months, you will regret giving up your job and your life. Instead, why don't you let outside caretakers care for her while you keep your life and sanity. It is your turn now.

Please take to heart the answers you are receiving to your question...Also read the questions and answers on caregiver burnout. I think your husband's family has found a way to avoid dealing with their grandmother/mother...you, because you're young and want to 'help out'.... throwing away your best earning years, social security benefits, etc., is a terrible price to pay to 'help out'. Don't do it!

I have to agree with all those who said not to do this. Think about it -- you and your husband will not be able to start a family because there won't be enough left of you, not enough time or energy, to care for a baby because you are going to be so depleted from caregiving. Are you ready for when she doesn't know you, when she lashes out in anger, when you have to change her diapers? I know of one Alzheimer's patient who took off her diapers and smeared the walls with feces, wandered off at night, and physically assaulted her caregivers. It is a horrible, ugly disease, and it's not the fault of the patients -- they have no control over themselves.

My mother has vascular dementia and I've been caring for her for two years, and while my health was perfect before, now I am on antidepressants and two medications for high blood pressure, which still isn't controlled. Be ready for sleep deprivation, and for the fear that if you even leave her to go get groceries, she might wander off or fall.

You can't do 24/ 7 alone. See an elder law attorney -- it will be worth it. If you are determined to do this, get paid now. At least then you'll get a little into social security.

Talk to hubby about the point at which you won't be able to do this any more. Often it is when the patient becomes incontinent. Make sure you get some respite every week. You must have at least one full day off a week for the sake of your health and sanity. Don't make promises about not placing her in a facility -- unless you can hire 3 shifts of aides, eventually you won't be able to care for a dementia patient.

Caregiving can destroy your life and your health. Please don't do this, and if you do, have a backup plan in place before you begin. If there are other family members, they need to pitch in and pay you. And hubby must understand that if you take care of her, you're not going to be able to cook and clean for him. You are not their servant. You have a life of your own. Don't let caregiving steal it. Please.

Wow, I read just a few responses. This topic hits way too close to home, and I really wish I had asked this question. These answers would have helped me so much. I needed so much help, and now, after just putting my Mom into a home, I still need help - but I'll pose that question on here later.
Saying that - here's a different spin on things.
- My Mom had foreseen this, and we had a discussion about what would happen about 20 years ago. She took out a long-term healthcare plan that would ensure I would be paid. She was smart. I was able to get paid, but I still don't have decent health insurance and can't go to the doctor no matter how much I need to. Losing your benefits is huge, unless you have them with your husband.
-I would NEVER do have done this for anyone else, but I had made a promise to my Mom. And, even though I lost my Dad (who died during this time), and my family, (due to their lack of understanding), I would still choose to leave my job for my Mother, BUT I would have done things so much differently.
-So, I would ask you, how close are you to your grandmother? Is it worth giving up so much? If your answer is not something like, "I could never forgive myself if I don't do this", then reconsider giving up so much. I don't know your answers, but I do know that my Mother was my best friend and my whole world.
-No one can make the decision for you, but please read what everyone here has posted. They are NOT being cold-hearted; they are being honest. (I am saying that because before I went through this, I would have been shocked at their comments, but now, I completely understand and agree.)
-Just consider all of the options, and I think it would be a good idea to go to a support group BEFORE you make your choice.

Find help if you are really going to continue with this. Don't be a "hero" and think you can do it on your own. I hope your husband is going to be a BIG help! It is HIS family member, after all! Look into home care assistance from local government agencies, such as an area agency on aging, local charities, etc etc. You'll need more than your loving heart to do this! And don't stop working all together. Find part-time work in your field if you can,
for the sake of your future and your sanity, and your health! I am speaking from my own experience/mistakes! Modesty is recognizing our own limitations! Take Care!

Please do not do this! You are not just putting your life on hold, you are giving it up. You just got married! You will want kids in a few years! But if you take on this responsibility, you will not have the energy to do anything else. It will completely drain you. The dementia will get worse and if she is even in fair shape, she could live a long time. You will be cleaning up messes you don't even know exist. You and your husband will not be able to go anywhere together without hiring a sitter. I will even go so far as to say it will break up your marriage. Get out while you can.

Well for the 1st yr for a married couple to take this on is very difficult, and you will have very stressed days it is a lot. I was the care giver for my mother in law , and my husband of 40 yrs also is handicapped and I see to his needs it was so stressful that I became angry and would yell at my husband because "it's your mother" ! where 's your sister or brother and I knew the answer but I still had to vent, I was told "you need to take time for yourself" right how ? Now my mother of 85 has been showing signs of dementia and I'm not ready for it ,, but this time I will have my sister to help , it is still a heavy task but do it with love is the most important and do find a way to decompress when needed and tell your husband that sometimes you might need him to just listen or help or just let you blow off steam, it's not easy having someone depend on you, and to watch hers as if she is a child (at times) you will need another family member to give you brakes or you will brake. wish you the best , my God be with you and your Grandmother in law and your husband I pray this will make you stronger together as how could he not love what you are doing for his grandma and him and his family this is very big and kind of you and that is what family is right good for you and many blessings .

You can read all you want, but, when the work begins it doesn't stop. My wife had my license on her desk and she didn't know it so when she moved on her own volition to the Assistance in Living portion of the retirement community I found it - yes, it was bummer but we had moved with the intent of me working as an RN for only five years. Well, that is gone and since I am almost 78 now, it wouldn't be easy to be hired again. My last boss told me I could come back to work any time. Well, she moved to another hospital and now as a Care Partner, I am spending a lot of time helping my wife since she wants my help and doesn't know how to ask for others to help her. She is 81 and has Vascular Dementia and is on that slippery slope which can last a long time. Finances are getting lower as I write since she would be a bear to live with for anyone including myself. So, she is in a private room. Hard, coarse, no, just honest. I love my wife and she loves me. May God give you wisdom. HE is the ONE we can go to for HIS guidance. AND HE has the answers.

Only 3 words for you"..DONT DO IT

Caregiverto89, just curious. Did your mother and/or MIL have dementia?

I have to disagree with the nay-sayers here. However, I would say that you should prepare yourself with some practical arrangements that will assist you in making this a positive experience. First, find a support group at a local hospital or health-related organization consisting of others who are caregivers. This will help you find good advice and a place to be listened to.
Talk to an elder care attorney now about POA, medical power of attorney, a will for the grandmother, and funeral and burial plans for her. Find out more about diabetes and how her own treatment is going. Can your own life go on happily while caregiving? Absolutely. Happiness is a choice. Get the help you need with home health care attendants, adult day care and much advice from your relative's health care providers. Can you work? Yes, part-time, flex-time, online, the possibilities are out there. Can you have a baby and take care of the baby too? Sure, there have been multi-generational households since time began. You will have one more to love, your husband's grandma, and love takes time and energy, but it is worth it for everyone involved. I took care of my mother, my mother-in-law, worked part-time, home-schooled my teen, and kept house. I don't regret a minute of those years.

I think it's a horrible idea -- at 30 years old you should be investing in your financial future, what if your husband divorces you down the road. You have no family ties to this woman. It's his grandma. Then there are the emotional and psychological issues that will happen between you and your husband and his family. You will start arguing as you become more exhausted, it's inevitable. Dementia is progressive, this woman will not remain "sharp" for long. Dementia is the most horrible disease ever, it takes your whole life away and stomps on your dreams and heart for a single caregiver.

Your financial future and health are at stake. Sorry to be so brutal, but you need to really consider what you are getting into. Being a caregiver is a state of mind -- some people are alright with it. But if you have a personality type that likes to travel, socialize, be productive etc. you are going to be miserable. If you are the type that just likes to stay home, cook, and be a "mom" to everyone then it may work. 

In my situation, I sit in the house 24/7 taking care of "things", since I'm an introvert it doesn't really bother me "all that much". But deep down I like to get out in the world and explore and learn new things (all on the backburner)... But I can't see a person who is a go-getter wanting to take this on willingly. But who knows maybe you were born to do this. Just prepare yourself. Right now I'm trying to work from home and be an entrepreneur, but as my mom gets more agitated and screams at night etc. it gets harder to concentrate on my goals to bring more money into the house to take care of her. But I'm trying to make a bad situation into a positive one. I hope...

Almost 5 years ago, I decide to take in my MIL in. Big Mistake. She was find then, but now has dementia. My husband and I argue a lot over her dementia. He doesn't get it. I am the in between person to control the situation. We cannot go on vacation anymore, no one around to help with that. They all coped out. We would have to paid for help, that means no privacy in our home (we are not doing that). It seems she is getting worse every day (cannot remember). We are exhausted from repeating every thing twice, three times and more. She is 97 now and except for the dementia, she is pretty healthy. We don't let her do much around the house except for the dishes because she can't see or hear well. Our retirement years have turn into a disaster. No fun. Stop while you can. Get Out and Run.  We don't even get her complete SS check for expenses, her daughter keeps the rest.  We are blessed because we don't need it.  We cannot put her in a ALF because she does functions (gets dresses, showers, uses bathroom and feed herself).   Anyway, I said my peace.
PS Have to take her every where we go.  Cannot leave her home alone.

Not selfish at all to be a person who freely compromises their every minute to be available to assist another person. Not selfish but very possibly foolish if you are going in without your own 'care plan'. If you have determined this is the path for you, I would highly recommend getting familiar with any Senior Services available in your area. In my experience, they sometimes offer free 'care giving' classes for people much like you. While the class is helpful and informative, the greater benefit I've found is to meet other people in my community who are going through the same thing. Being able to talk with people who truly understand and are supportive goes a LONG way in your own 'self care' that is so important to maintain as you find your physical, mental and emotional energies being drained.

Its one thing to care for a baby, its a whole different thing to care for a 100Plus lb baby.

Ive been taking care of my mother who stroked 4 years ago, she is currently 88 years old, my father 90...my sibs bailed 3 years ago. I thought the same way you are thinking...I can do this. I have a great friends and husband support system, I try to work but it is impossible to work in town. Luckily my career takes me out of town for months at a time. It's the ONLY thing that has saved me. I've aged, I am resentful much of the time, it's harder than raising my two boys which i did as a single mother. It sucks the life out of you and you will NEVER be the same. You will be showering, toileting, feeding, addressing dementia related anger/confusion/outbursts. If they are not there now, they will come and she is NOT YOUR GM so the ability to forgive is doubly difficult.
I suggest you go sit through a few Alzheimers support groups for caregivers BEFORE you make a final decision.

At 90 she can last longer. My mother is 104, nearly 105, and cannot do anything for herself, but her organs - heart, lungs etc. are strong. She is in an ALF and well cared for. I am 79 and have been doing distance caregiving for a while. Even that is stressful.
Was the house a "carrot" to attract you and your new hub to move in? As you can see from other replies, promises like that are rarely kept.

P.S. How are you at setting boundaries for yourself?
What do you do when you get rattled/off your center and need to regroup? How will you set boundaries for yourself?
How will you handle feeling GUILTY?
How will you handle burn out?
Have you considered these things?
You will need to figure out how you will maintain your 'self' [equanimity] and return to 'you'
How much support will your husband provide to you (emotionally) - have you asked him and/or told him what support you need?
Have you discussed w/your husband how this will affect your marriage and what HIS expectations of you are?

It sounds like you quite your job already. I am not clear

There is a very simple response to this: Look at the term "24/7". It becomes real, and no human being can provide "24/7" care, or do any other job "24/7". When they begin their night wandering and other night-issues with dementia, care becomes exhausting. Look carefully at all these responses and options before you quit your job.

Yes it will! I have been the sole care for 8 years my father is 85 and we live in the same house. I am a single 59 years old women. I have no to little social life I do work full time but I have to take off a lot to handle things. It is a very stressful situation. If you are not completely sure this is the road you should be going then it will be much more difficult. And your husband has to help sometimes just so you can have a break. Good luck with this new adventure.

You have some - many - responses to consider thus far.
My thoughts:
(1) Write down on paper WHY you are doing this.
(2) Write down the pluses and minuses (you seem to know some already)
(3) At 30 years old, will you be able to 'get back' into the job market if you decide to stop being the primary caregiver? if not, how will this affect you, your income, your self-esteem, and your marriage?
(4) Track ALL time you spend doing caregiving. It is important to translate this time into actual income (if you were getting paid).
(5) I think the fact that you are reaching out here asking for support and/or feedback reflects that you are unsure of this decision and need to consider it very carefully.
(6) ALWAYS make time for (1) you personally and (2) you and your husband. Keep your priorities straight and clear.
(7) Have back-up caregivers so you have time to take off (1) emergencies (2) weekly or weekends and (3) when you need to take a week off or longer.
(8) The words you use are reflective of how you feel about yourself "selfish brat" - it sounds to me like you FEEL and THINK that you are not allowed to have your own life and immediately jumping to self-depreciation. If you 'fall into this emotional and psychological way of thinking' you will burn out very quickly, feel guilty and lose yourself. You do not want to do that. And finally,
(9) as I usually say, see a therapist or someone professional in the field. Find out what resources are available to you and your family. Flush this out with a professional therapist or counselor to make sure you know what you are getting into and have the emotional and psychological strength to handle it. It is one of the most difficult jobs a person can take on. I know and I am not even a family member. I do this for a living and work with families.

Wow, so many great answers and advice here, I have to chime in. Yes, it will take a huge toll on so many aspects of your life. You are still young and my career was just taking off when I was your age! I was in my early 40's when my Mom starting showing signs of dementia. She made it clear after giving her any choice she wanted to have me be her caregiver and live with me and my husband. My husband and I had been together for almost 10 years before we got married and only had a few years together of "just us" before this took place. Now I am 4 years in to giving up my career, took on working part time as a caregiver so I would know how to handle Mom as she advanced in her dementia. She would have gone broke in no time in a facility or paying 30 an hour for outside help which I know she would not be keen on. My family has really broken apart (not that we were not dysfunctional already) but this brought it all to the surface. My brothers do nothing to help in anyway.
My life now........I am moody and tired all the time, I am financially dependent on my husband and mother to do what I need to do for her, I am a prisoner as I cannot travel, not even for a short stint, I feel like the servant to everyone and my "special closeness" with my husband has all but dissapeared. I am the caregiver, the cook, the maid, the laundress, the gardener, etc. My body hurts all the time and I mostly feel overwhelmed.
It is an enormous undertaking and until you are in it for a couple years, you cannot imagine the toll it will take on your life, your finances, your marriage, your overall happiness. Think twice before going all in because once you commit, you will find it much harder to back out. Where is the crystal ball when you need it?

Where are your husband's parents? Believe me when I say it is a very long and hard road. I take care of my mother and I go to a support group and also I found adult day program that I enrolled her in and she goes 5 days of the week and seems to like it. Also, I work full time and I'm very thankful that I have understanding bosses, because I would have had to quit. Hopefully, you will have some other ones to help you, but I seem to have lost family members and some people that I thought were my friends. It gets very lonely.

Best of Luck to you, I was married shortly after Mom moving in with me, she was diagnosed with Alzheimer's. In a lot of ways its very self rewarding knowing that your taking care of your mother or loved one, but I can tell you after 4 years it really can ware on you. I continued to work a demanding full time job with the help of a caregiver, I did not have a lot of luck with caregivers doing right and even had one steal from me. Even in the early stages of alzheimers its a very tough and demanding job but as it progresses not only is it demanding but it is at times very hurtful. To watch your loved one's mind diminish and to see this terrible disease continue to take them to nothing is almost unbearable. My family would not help at all so I was on my own trying to take care of Mom, I would do anything in the world for my Mother but it did finally get to the point that it was no longer safe to have her with us. She had started to fall and I had to have her rushed to the ER, there were no signs but we found she had pneumonia, Watch for UTI's I had been warned but when it happened I though she had snapped, a UTI is just terrible and some develop them quite often, their whole personality will change and if you are not aware you will have no idea what to do and what is going on. I hope you have help, It came to the point that I could go no where, no freedom. My husband travels and is gone approx. 3 weeks out of the month so I was pretty much on my own. I did not even feel safe to run to the corner 7 -11. I know I'm giving you the worst case but just trying to prepare you, its not an easy job to do. Please understand you will also have a lot of wonderful times. Its not all bad but as terrible as this sounds and makes me feel I am relived that Mom is now in a Beautiful home, the staff is wonderful and she is receiving the care that she so desperately needs. It was to the point that she had no control of her body functions and that is a very rough thing to deal with. That is also when the UTI's set in. I wish you the best and NO to answer your question you should not feel bad. Actually I have the upmost respect for you and your decision to take care of her and I wish you the best and pray for you.

You know what gets me, where are her children? The first thing that should have been established is that this is "his" grandmother. What you do for her is out of love for him but...when he comes home from work you expect him to help as much as he can. That can be doing laundry, cooking, making beds. Hopefully you are a strong person. Hopefully you are ready to clean up the messes she will make. I'm surprised that you saw this as an option. And, you cannot do this 24/7. You and your husband will need to be able to "get away". Does she have any money? If so, consider respite care every so often. Line up family members who can sit with her while you run errands or go out on a "date". But please, do not try to do this on your own. I had support of my husband. You both are young and I think have taken on a responsibility you had no idea what was involved. I remember 30. Your outlook on life is so different. Believe these women when they say, you shouldn't have done it. Not everyone can be caregiver's. Really, it takes a special person and maybe your it. Me, I wasn't and even though Mom is now in an AL, I still have responsibilities I rather not have to deal with. Hopefully, in the next couple of months a lot of those I won't need to worry about. But for now, it's a daily thing.