Any advice for a new caregiver?

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

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.

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.

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...

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.

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

Only 3 words for you"..DONT DO IT

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.

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 .

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.

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!

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.

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.

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 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.

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

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.

"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!

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.)

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

Think long and hard before you take on this challenge. It's not easy at all.

I thought it would be joyful and an expression of love for God, Mom and our family when I moved back home from Colorado to care for Mother. She is adorable, pleasant, fun and loving. It was at first but then certain family members and the facility where she was forced her into in their Personal Care residence. Their attempts to force me out was a nightmare. The facility charged $25 per hour for a Nurses Aid and cut the hours I was with her. They turned Mother into a confused, sickly invalid. (She could walk with a cane and was Independent when they took her over) It would have cost $200,000.00 per year for 24 x 7 Nurses Aids. The facility injured Mom badly and made me the scapegoat out of their greed. My brother came to his senses and my son and I moved Mom to a different facility. Family is with Mother 24 x 7. Our cousin is still self righteous and I am fearful of future interference on his part. My son and/or daughter-in-law come in every day so I can go home for a few hours, do Mom's bookkeeping and my own, shop, keep appointments, go to church, etc. 24 x 7 is very intense. I hope you have some help and you never have to go through power struggles. If you are her Caretaker help her to stay active, eat well and enjoy life with her and your family. It can be very rewarding. Through our hardships we have a close loving family and my Mom is the center of our family life together. She will be 100 years old this year and the new facility is nothing like the other one. They are in all ways supportive and we are very happy here. Mother is looking better every day and she is getting out of her wheel chair and walking 30 - 50 yards with her walker. God willing she will have many good years. She knows how much family loves her and vice versa; that gives us all peace. Blessings and I hope you can see the possibilities of a happy life caring for your grandmother on your husband's side.

daughterlu: Glad all turned out okay.

LlamaLover, Thank you very much and thanks to everyone for being here.

moecam, I agree with you that there must be a contract in place. But I'm laughing at the parts about making other family members take some responsibility. We don't even know that there are other family members in the OP's situation, or if they are are capable of participating in care. And from many, many posts here we know how very hard it can be to insist that family members provide respite or anything else.

There is a thread on this with 100+ helpful hints - try to find it

Set her up in comfortable housing or apartment You are putting you life on hold and it's not selfish. If anything if you do, you will end up tired and resentful which will ruin your relationship with her and others especially your husband.

Stephanitely, you would benefit from reading through this thread:  https://www.agingcare.com/discussions/write-out-tips-for-newbies-213718.htm

Good luck!  :) 

Set her up in comfortable housing or apartment You are putting you life on hold and it's not selfish. If anything if you do, you will end up tired and resentful which will ruin your relationship with her and others especially your husband.

Stephanitely,
"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. "