Any advice for a new caregiver?

Just to inject some humor..............Moecam, you said you were taking an extra ten in the bathroom to type out your post? LOL

Sorry, I know this is serious but you've got to find humor where you can right?

It was funny that Moecam would have taken more than ten minutes respite in the bathroom, except, that returning (outside of the bathroom) to finish the post was important.

It was even funnier to me that just this morning, I was wondering if I should move my electronics into the bathroom so I could spend more time in there!
These thought coincidences are popping up all the time.....makes me wonder if there isn't an alternate reality one enters as a caregiver, sort of like the twilight zone. Or, the Hotel California (song), you can check-in, but you can never leave.....mwah ha ha ha...!

Does she not have children or anyone else to make decisions for her care. At her age she is bound to have POA, Will... I agree with EVERYTHING above and more. Did that for 3 years, and basically gave up my life. NO FREE TIME for YOU will burn you out and destroy a marriage fast. Dementia often turns to Alzheimers' FAST! You can't take care of her alone. Don't give up your life and your future. There are plenty other options. These other comments may sound cruel, but they are true! We've BTDT, for years, and KNOW it is the hardest job we've ever had. If you value your life, husband and job, then find a way to get 3 shift people, a case/placement expert and so forth. It will come a time when she requires the assistance of 2, 24 hr people. And the remark about "family" coming out of the woodwork when g.ma dies, is true. It can be vicious, and often is. Such a shame family can be so cruel. Keep excellent records and a journal - you'll need it. If you haven't already, she needs to see a neurologist. NIH.gov division on aging, has great elder care resources. "Caring for a Person with Alzheimers", guidebook = excellent! for dementia too. Look for an Elder Care Resources Council, and go to a Caregiver Support Group. These advised me a LOT! I pray for you, young lady. Good luck.

see above

Listen, believe me when I tell you that this will become very difficult. Caregiving can take a toll on you for sure. I would not suggest that you quit your job, I would recommend that you find a caregiver that can come for the period of time that you are working from Monday to Friday and weekends you can spend time caring for her. Hopefully she has a pension check that can cover the cost or assist in the cost, but you are young and it will cause issues later. Please rethink, and find other options that will allow you and your husband to be a couple without be strained by a family member being in the middle of your relationship constantly. No you are not being selfish, by asking the question and seeking out other opinions is being wise.

Boy you have gotten a ton of info and opinions. Approach this as your "job" for the time being. Negotiate a contract right now. You can't work 24/7. Get in writing from your spouse and and other family members who will help. Days off, sleep. You will need help and pay. You're newly married. You're used to having some money of your own. Ask now. You will earn it. Approach this as a business and your marriage and such might be ok. Just love Grandma up the best you can, while you can. God bless.

Steph has responded with another thread - https://www.agingcare.com/discussions/why-so-many-negative-posts-and-replies-427496.htm

"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!"

My dear Stephanie; it appeared to me that you had doubts about the role you had taken on. You asked for "any advice". It was given to you.

I'm glad you feel so happy and validated in your new role. I hope that your happiness continues. We are always here to give advice, opinions and thoughtful feedback. What we do not do is sugarcoat the journey that many of us are taking in caregiving dementia patients.

Dementia goes one way: downhill. It ends, often, in double incontinence, paranoia and accusations of abuse. We're trying to tell you what might lie ahead. My best wishes to you.

There is so much negativity is overall answers, I was glad to see another positive above.

Hm. "Negativity." If you've started down a road and others have good reason to believe that it's a winding, troublesome road, where many others have broken down by the side of it while trying to travel this dangerous road, and there's a part where a bridge is known to suddenly fall apart beneath you, and there's another part where you might experience falling rocks crashing down on you...

...and you warn someone of the serious dangers as they begin their journey on this same road that you know could be fraught with many hazards...

...if you warn them, are you being "negative?"

I think this is one of the most supportive groups online. We all want what is best for the OP. We all choose to be caregivers, most of us, in spite of the difficulties, but it's not something to be undertaken without at least an acknowledging of the "likely case scenarios." These aren't "worst case," it's quite LIKELY that there will be difficulties, and then some emotional resentment, in the future. When OP runs into the difficulties/problems, she can make up her own mind about how to proceed and go from there.  

But as many of us know, caregiving has a way of getting you STUCK in the muddy, winding road.  

"Negativity." I wish everyone well. Your caregiving journey is your own. I believe all advice was given from a place of concern.

I'm not trying to be snarky, please don't interpret that way. It's not "negativity," it's CONCERN and probably more than a few of us wishing we could've seen the future when we started our caregiving journey.

Steph, if you take one piece of advice, please get a written caregiving agreement in place. This is your job now.  You don't know how long you'll be doing it, and while you are doing it, you need to pay something into Social Security so your own future financial security won't be threatened.  I started caregiving at 35.  I was strong, relatively fearless, compassionate, and I thought nothing truly bad could happen to me if I was trying to do good for others, right?  Super naive of me, I know that now.  I was so WRONG.  And now I'm 42, trying to put a life back together for myself, no home, no job, few employers want to hire someone who's been out of the workforce for almost 6 years...  My relationship of 12 years ended about a year into my caregiving (it was somewhat "on and off" but was very much ON and moving forward when I began caregiving).  I couldn't/wouldn't leave my special needs father in a bad situation, I didn't know how to get other help for him, and I paid a steep price for trying to help him.   I know now that I could've applied for other types of help, it didn't to have to be me doing the hands on every day, and he wouldn't be worse for it and I wouldn't be having to start over in life.  That's not what any loving parent/grandparent would want for us -- to risk our own lives to care for them.  There are other options available to you if/when things get too tough.      

Good luck to you.  Everyone here wishes you well which is why they bother to tell you what has happened to many caregivers.  :)  

You can be as sunny and optimistic and POSITIVE as can be, like a little fawn gamboling in a clearing in the forest. Life is wonderful! Your heart is full of love and compassion! You WILL do that voodoo that you think you will be able to do so well. .... Good luck with that, Listen to we who have BEEN there, done that.

As big as your heart must be to care your husbands grandmother, you are undertaking a huge task. Make sure your husband will be a part of the care, you will not only need his support you will need his actual help. I'm 65 and I have sole care of my mom who is 87. I work part-time and that is the break I need to keep my sanity. I am extremely fortunate to have a very caring neighbor who watches my mom while I go to work. I don't have to worry about using an agency to find the perfect person. My 3 siblings live out of town so if it wasn't for my neighbor I would have no one for support. My mother is able to dress and bathe herself. Her mind isn't what it once was and she gets confused and that's where my concerns lie and why I feel she needs someone in the house with her. There will be times when things are not good just remember she probably doesn't really know what she is saying. She will probably blame you for things or say awful things to you. It happens to everyone who cares for an elderly family member, but people don't talk about it. Keep your family posted on her ups and downs. It doesn't have to be detailed but it will let them know what you are going through and will more than likely encourage them to help you occasionally. Get family to send her a note or card and call. If you haven't cared for someone who is elderly they love to hear from other people even though you are there for her they like to know others care too. I have found giving my mom a purpose has helped her mentally. Hers is a simple morning routine of getting ready for the neighbor to sit with her. I take her on short rides in town. We're lucky we live by the river and the ocean. As they age they may not like to go anywhere but sitting on the porch can do the trick. People age differently. She may be able to do more than her family realizes. Does she have talent/skill that you could do together or she could teach you or you her, like knitting, coloring, swimming. Your of the entrepreneurial generation, maybe since you're at home you can work from home. Don't forget about caring for yourself, too. It's OK to be angry with her because the next day will be a new day and you can start out fresh. Keep us posted on your progress, we're all going through a similar situation and it can very tough at times. I remember praying all the time to God to help me and finally asked God why He wasn't helping, then I realized He was because I still have my sanity and I am happy.

Hi just want to say I just started this more hands on caregiving with my mother, since mid February. I found Stephanie's thread very helpful. It's still rosy for me too, not as rosy as yours Stephanie but not at all as hard as it will be in the future! I did something similar with my MIL not 24/7 but daily for many many many years. I'm also older so I guess I don't see any of this as negative, I see it as helpful & informative. If I want roses I can talk to all the people I know who haven't done it & wont ever do it. They love to say things like "I wish I still had my mom, I would've loved the chance to care for her". Or "you two must have such fun together all day like when you were young". So thank you for starting this thread, & thanks everyone for the advice, I found things I could use.

Add me to the chorus of those who have concerns. I find it interesting that it falls in your lap. Why aren't any of her blood relatives stepping up? What about your mil or fil?

It's YOUR earnings history that will be affected -- your possible Social Security, retirement, etc. You are 30 years old.

Good deal for your husband's family! For you? Not so much.

Are you getting money from Grandma for this job? (Please, please say yes!!! But I suspect you are getting nothing.)

I suspect you and your husband moved in with her to help yourselves financially, right? You have just sold your soul to the devil. Anyone that was previously helping with grandma's care will now disappear. Call a family meeting and insist other arrangements be made. Or, just pack and leave. You can still be an occasional helper.

I'm with you OP. I'm in my early 30's and will be taking my Mom in soon with my husband. She's also diabetic but instead of dementia is an amputee. For now, she is fairly independent and can manage a fair amount of things, but there's no way to tell which way it will go.

One thing is for sure, I'm not giving up my job and I work a day-job and a small business at night. I plan on hiring a part-time caretaker to see to major chores and her bathing routine. While things are going to change while we care for Mom, I'm going to be steadfast in sticking to my dreams and goals.

It's interesting that you guys moved into her home. I don't mean to sound insensitive but I wonder if that feels like a loss of freedom as the space isn't "yours." We opted to move my Mom into our home and we're helping to sell the house she lived in to cover medical costs and provide future savings.

Best of luck. It's hard to be a new and young caretaker. I'm rooting for us. I'm looking for friends to relate to here. So if any venting/sharing is needed, I hope I can help. =)

Dearest Stephanitely86: Oh no! I really wish you had asked for advice from the multiple, excellent-advice givers we have here on our forum. People like pamstegma and others including myself have been down the extremely draining and difficult road of caregiving. None of it is pretty. Quite honestly as others have also said this was a very bad decision. These are your prime earning years. This is the time when you could easily hold 2 jobs (full and part-time) without tiring. Not to mention the stress this is going to put on a new marriage. IF YOU CAN GET OUT OF THIS COMMITMENT, DO IT.

Wow, Stephanie! You've taken on a big load. But look on the brighter side: you're young enough to have the energy and willpower to do this without going crazy.
Things could be far worse. You could be a whole lot older, or much younger. You are neither, so this caretaking you want to do may not affect you negatively very much. You'll learn and grow wiser one way or another and go on, capiche?

Stephanitely,
Consider this scenario: You are tired, expect hubs home to relieve you a bit from the caregiving role. He calls, complains of being overwhelmed with gma's decline and needing care. Compassionate person that you are, you generously wish him fun with going out for some beers. He comes home late.
A year later, this has become a habit, and he also requires Saturday mornings off to golf. He starts to like being out more than home with you and gma.
You slip a little on your self care because of the demands of caregiving. You thought you and he were in this together......but he is often out, enjoying his free time, and you have none.

Not a very romantic first few years.

Eennnnhhhh. I posted you about this already, but I didn't add this: be patient. Then be more patient. Be more patient than you ever thought possible. Afterward, wait more and don't get worked up about it. Be calm and serene as best you can - it gets easier later so don't sweat it at first.
Having anxiety on your part will not, repeat not, help you or her.

Sendhelp: Spot on accurate!

I answered before but think I missed the mark regarding a share in the security your husband may be acquiring through his work or promises from his grandma and the loses quitting your job might have on a 401K program or savings from earnings. If you stay married for 10 years or more, when you reach retirement age you can collect social security on either your or your husbands social security, even if you divorce after 10 years. Make sure you know how much your husband earns, does his employer have a retirement savings plan? Have you and your husband talked about this? Do you have goals? Look on the internet how newly weds make budgets. If you are giving up your income is your husband willing to provide you with basic needs? an allowance? Do you keep the check book or does he? If he isn't sharing with you, make sure you speak up. Agencies can charge $20 to $25.00 dollars per hour and individuals may be willing to work directly for a family for $12.50 to $15.00 per hour. Advocate for yourself. Make sure you are building a good future with your husband where you both have security when you are older. Time passes very fast. Blessings.

Check out the 'tips for newbies - can we reach 100?' site on this forum - read all from beginning - lots of practical, time saving ideas

Yes, caring for another person in the capacity as we do as a caregiver can be stressful and there are some days when we just don't think we can go on. But I read some things like, 'none of it is pretty' and 'it will ruin your life' and those things are just not true. It can be as bad as you want to make it and I understand that we do have a tendency to become bitter about our situations and could see ourselves putting ourselves in your place as an avenue of escape like watching a movie about a person that runs away. However, as hard as it gets, it is not all bad. Caring for another is, or at least should be an act of love. There will be good times that you will be able to carry with you when it is over. But only if you keep the right attitude. If you want to be bitter about it you will have plenty of memories of the hard times. But I advise you to try and store up memories of the good times. You will be closer to her than anyone else and you will develop a bond that the other family members don't have. Build on that and store those memories away.

Having said that, do try and get other family members to help and do find time to get away from time to time. Sometimes we have to set our supercaretaker capes aside and do something just for ourselves. I don't know your whole situation or why closer, biological members of the family are not doing it, but it is what it is. Hospice nurses are not biological members either, but they care. Yes they are being paid for it, but the money has nothing to do with the care they give. Otherwise they could have picked another profession.

I don't know what state you live in or the laws there, but you may not have to be looked at later as leaving the job market. Is there any way you can have the state pay you for your care? You might have to take a couple classes or something, but then at least you could help your GIL and still be in the job market.

Try to remember that it can be hard not to become bitter sometimes, but we don't have to be if we don't allow it to happen. Look at the love and the caring that has to be involved here. When you look at that person who needs care, remember that you will be old one day and you may need care at some point. Treat that person as you would like to have someone treat you. They are still a person inside there and deserve the love God meant for them to receive.

This thread is 13 days old. Where is Stephanitely86? We have not heard back from her for several days. She must have continued on with the direction she had already chosen.

Another fly-by, cmagnum. I wish her luck.

Just keep in mind you are joining his world not the other way around. Find out about his child hood. When his values were programmed. About his family and life history to better relate to his comments. God bless you bunches for taking this on. In caring for my wife of 17 years and she doesn't have a clue who I am other than the good guy that is nice or the bad guy that says no we will do that tomorrow. Be aware of mood changes and try to find the cause. Keep in mind its not about you or caused by you and its not him. Its the illness. Gods blessings to you. : ))

Hi everyone, I'm still here! Lol. Sorry I've been MIA for a while. Things have been going really well lately. A lot of those posts saying "turn back now" and "your marriage will suffer" have really made me do some thinking. I had a long discussion with my husband about me eventually feeling resentful toward him bc he gets to do whatever he wants when he wants, but it won't be like that. We are sharing our duties as caretaker and we will be working as a team- easier said than done, I know things won't be easy all the time. We will be paid for caregiving, we have an elder lawyer and all the legalities worked out. The first week we moved in with Mammy (that's what we call her lol) she had a serious bout of diarrhea and she actually suggested I call an ambulance. It was scary indeed, but I kept my cool and had to call 911 for the first time in my life! We had mammy on a low fiber diet because she had traces of Colitis found in her stool.. I was sure to Clorox everything in the house. It's about a month later and she's doing well, and so am I! Every morning she asks what I'm doing there and I just smile at her and let her know I'm the one who will keep her company from now on and that we moved in! She's happy that "strangers" aka visiting nurses don't have to come anymore. I put my notice in at work and I've decided that being home with mammy is the best thing I could do- my current job was silly, minimum wage at a furniture retailer scheduling deliveries in the office. I'll miss spending my days with people my own age, but that's not a huge deal. I'm excited I can provide the care and attention she deserves. Husband makes the big bucks during the day and comes home to relieve me for a couple hours. Mammy goes to bed at 8 and we have the night to ourselves which is quite nice. The next thing I want to do is have a baby now, since I'm home and all. Crazy??

Yes. Completely crazy.

Yes agreed - completely crazy. You are not thinking of the child's welfare in a home with an elder getting progressively sicker with dementia. No one in their right mind would recommend bringing a child into that environment. Just because you have survived one bout of diarrhea does not prove anything. Read up about the phases of Alz. Those who suffer from it can become violent. Mammy will not stay as she is - she WILL get worse.