What are some things that surprised you when you began to care for an aging relative?

Jo, I know that this isn’t what you asked, but please think twice about moving in. Could you go and stay for a couple of weeks, just to check out how it’s likely to live in practice? You need to find out about the effects on you, as well as your grandmother's needs.

Jo, I agree with Margaret. Give yourself a couple of weeks trial. You need to consider your own needs - especially with your own privacy. You won’t have any privacy. Many seniors don’t consider the privacy of others. Many seniors are all about me, all the time. Know exactly what you are getting into. Your intentions may be good, but maybe not realistic.

Care for her by discussing a long range plan for her care and who has durable POA. If she is unable to or unwilling to discuss these important aspects of her care, you will be starting at a great disadvantage.

Make sure you get POA'd, both financial and health. If you don't get those, it's a non-starter. Also make sure you get assigned as a rep with the SSA and her insurance company. It's super frustrating to have a health insurance problem and the phone reps won't talk to you because you aren't on file.

It will get harder and harder and harder

Well, all of it was a surprise. I never imagined the level of personal care I would be taking on.
At first it was just mainly keeping my mother company, taking her to appointments and outings and simple meal prep and laundry, all things she had been managing on her own but not necessarily in the best way.
Then I started helping her trim her toenails.
Then her fingernails.
Once I moved in it became clear that she had been making due with sponge baths for a very long time, so I helped her get into the shower, then I actually washed her.
She began to fall, not often and she was able to help me get her onto her feet, but it was still a physical effort. She started using a walker but would forget when she went to the bathroom at night, so I started sleeping on the couch so I could hear when she got up.
Thankfully all of this happened gradually and I had time to fully adjust to each new task before the next one cropped up. But I never, never anticipated the level of care I would eventually provide - that she would need to be spoon fed, become dual incontinent, oh, and I mustn't forget the cognitive decline. When her mobility decreased so that she couldn't even bear weight long enough to transfer from bed to wheelchair I finally conceded defeat - totally burned out - and placed her in long term care.
Although I was reluctant to pull the trigger I did have a Plan B, I urge you to do the same and to identify which lines you aren't prepared to cross.

Everyone here is correct to say you must get POA (Power of Attorney) for your grandmother because otherwise you can't get any information from her doctors, authorize her care and treatment, or have access to her bank accounts (for her benefit ONLY) to pay her bills. You and your grandmother must consult an elder care or trust and estate attorney before going any further with this. Also, your parent who is her child and their siblings need to be on board with this.

How old are you? I’m gonna guess in your 20’s or early 30’s.

When I was that age, people my age - that I am now - were always telling me “Enjoy this time. You’ll look back at it and realize it was the best time of your life”.

I don’t know if it was the best time - having a baby, meeting my (current) husband and our courtship, being able to buy my dream home - all events a little later in life certainly rank high on the list.

But yeah, overall my 20’s were footloose and fancy free. And, I did it right. I was able to move around for my job - which meant promotions and pay raises. I went out dancing almost every weekend with a group of wonderful girlfriends (the last gasp of Disco, dont cha know) and I juggled dating three guys at once.

I had an absolute blast! And, my happy memories of that time in my life helped get me through more than a couple tough times that came later on down the road - as tough times always do.

I realize that this isn’t what you asked. Sorry - not sorry. But...

I strongly recommend you reconsider the choice you are about to make. Especially, the part about moving in with your granny.

I think it’s admirable of you to want to do this - being caregiver to your grandmother. But - it’s a hard thing to do. Much harder than I’m afraid you realize. And - it will only get harder. A little assistance here and there can very well turn into a 24/7 situation with you trapped and no way to get out.

Spend some time reading the posts here. This site is full of well intentioned folks - in over their heads, abandon by other family members who are unwilling to help, their job/ career prospects diminishing with each passing year - right along with their own financial security - chained to a mentally and physically failing elder - with no way out.

Yes. Spent some time here reading the posts. And then - if you still want to give it a shot - make sure you have an exit strategy in place. And, make sure all the other family members know - these same family members who are right now, pledging to pitch in, provide breaks - the same people who will begin to avoid you like the plague when break time comes - make sure they know - WITHOUT A DOUBT - that you are starting this endeavor on a trial basis.

As to my biggest surprise? That would be - just how depressingly awful it all can get.

Don't do this. You have no idea what you're signing up for.

What surprised me was the lack of services or help...they make lots of promises but when you actually need something they claim they can't do those things. Another surprise was rehab nursing homes and hospitals not seeming to know that urinary tract infections are very common in the elderly and can cause behavioral changes. I had to push often for a UTI test for my mom, and it always came out positive. You sound like a good and caring person and I wish you all the best in caring for your dear grandmother.

I have to agree with alot of the posters.

I always heard there were so many services for the elderly but finding them seemed impossible. And if you did you didn't qualify for one reason or another. Doctor told us to call to get home visits for a routine procedure because me taking off of work on a weekly basis was not working. When I called and they found out that my father was not utterly home bound he did not qualify.

The more you help the elder the more helpless they get. They stop seeing what you are doing for them as help and more of them doing you the favor by allowing you to help.

No one cares how you are doing. If the elder is treating you badly everyone still feels for the elder (this must be a scary time for them! poor thing!).

You will get so much misinformation for experts.

Imagine how much work this will all be. Now multiply that by 1000.....there is your answer.

What surprised me was how quickly my good intentions "to help" turned into a nightmare for me. I went from helper to controller in her eyes and she became hostile and hateful and the relationship will never be the same again. You don't want to go through that with your grandmother.

One thing that you wrote alarms me and that is "falls often." This is a sign of serious trouble that needs to be addressed. When we age the we lose the fluid around our brains so the brain is less protected during a fall. So even a simple fall with no hit to the head can cause brain injury to the elderly.

Where are her children? Are they involved with mom?

I notice a few recommendations for you here that include “discussing”.....”reasoning with”......”getting a POA”.......”long range plan”...... What these otherwise reasonable sounding considerations have neglected is that you already know that your grandmother is currently experiencing memory loss, and except when caused by a UTI, dementia causing memory loss doesn’t improve, but more typically gets worse and worse.

Then there’s the inevitable gap between “intrude on her privacy” while knowing that part of your responsibilities at some point sooner or later will become relieving her of all responsibility for decision making concerning her needs.

And ”help in the right way”? There is NO RIGHT WAY to choose how to help. As your grandmother’s ability to make good choices deteriorates, her frustration may increase, leaving you to need to learn to overlook her input while making the best of less than good choices for her care on your own.

Before you formally take charge in this situation, DO YOUR RESEARCH. Have you been given legally sanctioned access to ALL of your grandmother’s financial and health assets? Medical records? Legal status? Are you aware of local social service agencies and their potential availability for her? Have you identified and possibly visited residential sites that may serve as resources for her in the future?

Finally, do you understand that meeting requirements for safety, providing basic needs, and providing vigilance in observing changes in ALL aspects of her life is, or has potential to become, a 24/7/365 job that can last for years and years.

Your youthful altruism needs to be constantly subjected to your intelligence, intuition, observational skill, physical strength, and common sense. Is it?

My husband and I have my father in law with us. He has Alzheimer’s and Parkinson’s, so falls often, lots of memory issues, delusions, is verbally aggressive to me and my sister in law and has lots of appointments. What surprised me most was how all consuming it was. There should have been boundaries in place. It’s hard to put them in place now, but I’m trying. Lack of sleep was unexpected and has taken a toll on me mentally and physically. (He wanders at night and is more active then than daytime.) How little other family offers to help since he’s at our house was disheartening.
Good luck whatever you decide. Remember self care isn’t selfish.

I'm so glad you asked, jobot. You're very kind and considerate to consider helping out your grandmother this way. I moved in with my mother who was the same age and had the same issues as your grandmother. You asked for ideas to help her and did not ask whether you should move in. But in one word: don't.

Your grandmother's condition WILL deteriorate. Caring for her WILL get harder and more demanding. Her condition will take her (and thus you) on a ride that she cannot stop or control. Unless you have a lot of family or friends committed to giving you mental/physical breaks, chances are you will experience total exhaustion and isolation. Then there's the concern for YOUR financial future if you can't get a job. Except for Alzheimer's progression, your grandmother could last for YEARS, and each year her condition will deteriorate requiring more care--harder-to-provide care for one person.

To help your grandmother, as others have posted earlier, contact her POA (or other person who's familiar with her needs) and ask what the POA might need help with. Is Assisted Living and perhaps a skilled long-term facility in her near future? Does she have live-in help now? Can you spend the weekend with your grandmother to help her, and get to know her history (and spare her caregiver)?

You can help your grandmother a lot with treating her with dignity and by being patient and actually answer her repeated (and repeated) questions. Take her out for drives or places she might be able to go. You can do a lot for your grandmother to help her stay in her home. She (via her POA) must help you and her other caregivers by paying for a cleaning crew and a gardener, et al.

Bottom line is, as admirable of you to consider moving in and trying to keep your grandmother in her home, as many of us who have been there or are doing that, it's a LOT harder than it seems. The short-term and long-term tolls on a caregiver can be very serious.

The most surprising thing is that it never occurred to me to run away before significantly damaging my life with no end in sight.

Your situation of moving in to look after an elder is different to my family, yet there is a trending pattern that can creep up on a person unexpectedly while everyone adjusts to the new paradym of caring or being cared for. The subtleties are best understood if I use my own story to illustrate.
My mother did not move in with me, but rather with my sister and BIL . She had been steadily declining for some years, it was the more or less forced sale of her property to developers that meant she lost her home of almost 40 years. We were not prepared for the unhappiness this would cause her, especially when she had always said she would be happy whilever her girls were around her, that was all she would want There are 3 of us by the way, she wanted us all to live side by side. She was very unreasonable when this expectation could not be realised, not because we refused to change our living arrangements, but because the properties did not exist in the rural area in which she wanted to us all to remain.
After a lifetime of scrimping and saving, making do with little, we thought she would enjoy her new financial security. She could buy anything she wanted, rather than needed. She was free of the responsibilities associated with running a property, something she had been doiing for almost 20 years after my fathers death. But instead she hated the loss of independence, the sudden big bank account daunted her, sometimes to the point of despair. Forgeting about it has been the only positive to come from dementia.
This was my sisters first home, brand new, modern, or as mother said, posh. Yet mother insisted they use all her (mothers) shabby, damaged furniture, patched linens, rubbish art, useless collections of bibs n bobs, kitchen items.....everything from her washing machine right down to her measuring cups and vegetable peelers. She was no longer cooking but wanted her own stuff around her. My sister has lovely household and decorator items more suited to the new home, but they had to remain packed in removalist boxes until mother went into permanent care 3 years later. She did not appreciate the disappointment this caused. Mother had even insisted on them buying a particular home that was not suited to her own growing physical needs, nor to my sister and BILs failing health.
Mother was disappointed, even hurt, that we did not value a lot of her belongings as she did. She also expected to eat her traditional type of meals, not their preference for more healthy food, to watch her programmes on tv, for them to all retire at night at her prefered time, to sit with her as soon as they came in from work, and on it went. My sister is a teacher and has a lot of prep work to do each night. This caused resentment because she (mother) was not the sole focus of tbeir attention.
Vision is cerainly 20/20 with hindsight. Although mother was diagnosed with only MCI soon after the big move, it is now obvious that dementia had really begun to take hold. We had absolutely no idea what it involved and how it impacts not only the victim but the entire family. This person who moved in with my sister and BIL was no longer the considerate, generous and easily pleased mother we grew up with. Her deteriorating physical state was nothing compared to the onset of dementia...she is now diagnosed with 3 types.
Jobot, the best advice I can give is to find out all you can about your grandmothers failing health from her doctor, but most especially how to cope with her memory issues. There will be no right or wrong way to approach them a lot of the time, but be ready for the unexpected. It is all a rocky ride. You are a good granddaughter to want to care for an elder, just dont let it take over your life longer than you can cope.

My MIL moved in with us after a heart attack, CHF complicated by afib, as opposed to moving in with her. A bit of background, grown children out of the house, we were retired with DH still working 3 or 4 days a month for former employer. 2 SILs who didn't want to help do anything. Big changes for us, she had a bedroom, 2nd bedroom was turned into a sitting room for her use when she wanted to have "me" time, her own bathroom, otherwise she was in livingroom or kitchen with us. My day started around 5 am so I could get majority of daily chores completed before she woke up. Cooked 3 healthy meals a day, cleaned her bathroom a couple times a day, cleaned powder room a few times a day, not because I wanted to, because I needed to. My livingroom was taken over by stuff. You will lose yourself and friends because you will be too tired or too busy to be a good friend back. She will complain about everything she can what you don't do correctly, you didn't take her with when you ran out for 5 mins, even tho you get them out 4 days a week. Neverending laundry, medication, dr visits, poor me attitude, pouting, manipulation, rudeness, fast forward to a fall when she was with her daughter and broke her upper arm, assistance with bathroom due to needing help with pants (2 or 3 visits during the night too so disrupted sleep), morning washing up and dressing, refusing to use canes or walkers because "they" will think I'm old. Argumentative behavior regarding dr orders, eh I can do it. Think about caring for a large toddler 24x7. Fast forward to a major stroke where she was paralyzed on her right side, bedridden, diaper changes, spoon feeding pureed food and water. What you're not ready for is the pain it causes in your heart because you KNOW it's not them, it's the disease that has taken them from you. Dementia takes their stops from them, makes them more self centered and demanding, you know that this is not the person you love but a stranger. Its shreds you to ribbons because they know there's something wrong and YOU can't fix it. After the stroke she was trapped in her head, she knew what she wanted to do and say but couldn't, only yes and no. Her suffering has ended and she's been reunited with the love of her life again. You will continue to play what more could I have done for her, what did I miss that could've changed her outcome? The answer is nothing but you will need to come to terms with it. Contact your local hospice or senior services center, they have very knowledgeable people who you can ask advice from. You may need to intrude on her privacy because there are times that they will not tell you if they feel ill or if something hurts. Dementia will not improve and will only progress. Does anyone in your family have medical and financial poa? Does gram have end of life instructions? DNR? If she has a DNR and you are caring for her you NEED a copy of it in your possession at all times ( I had a copy at home and I carried one in my purse/adult diaper bag for when we went out). If something happens to her paramedics and ER staff will continue to resuscitate her unless you have it to show them, verbally telling them will not work or be sufficient for them, they need proof.

Does she want you to move in? Are you OK with giving up your freedom and independence? I think the latter question is really important.

My only advice would be to lookout for your own (mental) health and safety. Do not pick up your grandmother if you are not strong enough and been trained to do so. You want to have the use of your back for the rest of your life -- and picking her up/assisting her up and down can take its toll. Be Careful.

You have to take breaks from your grandmother -- constant care is hell. Make sure you schedule time away -- a couple of hours reading at a favorite coffee shop once a day, a trip to the Y to workout, meeting with friends your own age...these kinds of things.

Have your own goals and hobbies that you continue to strive for/work on. Grandma won't be here forever, but you have to think about your future and what you want to accomplish with your time on earth, right?

Best -- Happy New Year!

I agree with everything posted here except the "two week trial". In two weeks you won't experience the mind-numbing, tearful, emotionally draining, mental health challenging, physically back-breaking, friend losing, etc experience of watching a loved one sink deeper and deeper into becoming someone you do not recognize. Once you make the decision to caretake, you take on more than you could ever imagine. At your young age I assume that you are also working. Soon it will become impossible to do both without major damage to yourself. Reconsider. Be a support to your Grandmother, but seriously reconsider being her caretaker.

This does not apply to your loved one, but it is very common....Remember this: she may not necessarily see "reality" as you see it, or as most might see it, but it will be as SHE sees it...Be prepared to possibly (probably?) not be able to understand how she perceives things.

I wish you well.

Bob

How awful that the elderly are sometimes treated: I even consider some people ignoring elderly people awful, too. When my father was alive, he cherished the interaction and visits from others. It made him feel better. So invite friends and family over, that is the key to a happier person.

PS: I know that you are not planning to ignore your relative, I wanted to state that clearly to you and others.

You won't be able to care for her "in the right way" eventually. It is not a one person job. Everything will get worse in time. How dear of you to want to help!
I love my two grandchildren and would not want them to give up their lives to take care of me in my decline. I don't want them to see me or remember me that way. I have told them to visit me when I am up to it but I will make my own arrangements to be cared for when that time comes. I did not allow anyone to come visit me when I was in the hospital several times last year because I look very scary at those times. I was well taken care of by the wonderful staff at the hospital and I got better and went home. I am not yet out of my tree and hope I can make my own arrangements in the future. I am used to living alone and I like it. I never feel lonely. I also know that I might be in worse shape as the years pass but I don't want my grandchildren to have to remember me like that or to fear the end of life. It cam be ugly.
Better to visit me when you are happy. Tell me what you are doing and your hopes for the future.

Unless it is someone you are close to like your mom, do NOT do it.

You may want to consider placement because it is only going to get worse. Assisted living, then nursing home. Will you be able to bathe and shower her, clean her poop and urine? Take endless time feeding her giving her fluids? I spent $10,000 tearing out the bathtub and replacing it with a walk-in shower because eventually mom could not step into it. Mom's alzheimer's made it dangerous to have a bathtub she would get in there and turn on the water and not know how to get out. So out went the bathtub...

my advice is do **NOT** do it. If you make this mistake and do it, then you will need to see an eldercare attorney, establish power of attorney, medical power of attorney, caregiver contracts, seeing a tax lawyer, estate planning...will....it is a LEGAL mess as well.

The cost of diapers is about 50 cents a piece. Mom used about 5 or 6 a day. A box of gloves about $10 (100 pairs). Lotions, bandages..ointments...and all your time. I spent tens of thousands of dollars of my own money on her care. I ended up sacrificing my life for her. 15 years of Alzheimer's disease.

You have no idea what you are getting yourself into.

I took care of mom for decades and she died at 90 but was total 100% care. So here I am 60 years old -- lost, alone, and I felt abandoned when mom died. I sacrificed my entire life for her. She was my world and she left me.

You want that?

Please reconsider doing this. My mom is 90 with very similar health issue. She has been declining for the past two years and has turned into someone that has no sense of reasoning. My dad (also 90) is her primary caretaker and is in reasonable health. I help as much as I can (I have my own family needs and a husband with heart failure), but they both should be in a IL facility....more manageable for dad to care for her and less stress for him. She will NOT move. So he gives in and continues to be exhausted caring for her and the "big" house. I know this will get much worse in time and I am bracing myself for it. Do not underestimate the amount of care she will require.....and will only get worse. They become demanding, selfish, self centered, and miserable. You will lose yourself in this journey. Although your intentions are honorable for sure, listen careful to the wisdom shared on this site. This is brutal work since you are dealing with a broken mind.....and this could go on for many, many years. The body will eventually succumb as they become incontinent, mobility declines as well as a host of other ailments. You will in essence become a robot with the day to day tasks that will need to be done. My advice: Don't do it.

surprises:
agitation and inability for mom to relax: around 2 pm each day she begins to agitate - getting up (which isn’t easy for her / fall risk) and wandering, fidgeting, displaying anxiety, etc. I have now become anxious around this time, as a result.

Refusing to go to bed at night. I’ve tried everything, including very long walks during the day. She’s so restless that she refuses to go to bed and paces such that her legs and feet swell. Last night this went on until 11:30pm, despite a cocktail of medication given at 9.

Not recognizing me and cussing me out. I’m her daughter. Last night she thought I was her husband. Sometimes she has no idea who I am.

lack of visits or check ins from family and friends - people get very distant when someone has dementia. You’ll be isolated in the house with her - be ready for it to feel like you’ve moved to Siberia.

Physical challenges you will face. You’re surely younger than I. I’m 51 and in decent shape. Go (WENT) to the gym, had a personal trainer, no health issues - after a month with my mom, my body feels shot. I ache all over, especially my back. My sleep is a wreck. I’m up and down all night. I work from home during the day (as the VP of a fortune 10 - and my cognition is severely impacted - I find it hard to even type these days). Exhaustion.

The big one: if she has or develops dementia, it’s a thankless job. My mom doesn’t recognize her condition or the strain on me. She has no idea what I do for her each day. Half the time she doesn’t recognize me or that she’s in my house. I overheard her on the phone telling her best friend that she lives in a nursing home and has an aid. She even gave the friend the name of the nursing home and a phone number. I had to call and explain that I’m the aid and the home is mine. She told someone else that I never visit her “it’s been years since I’ve seen my daughter”. You’ll care for her because you love her and want the best, but she may not even know it.

As a result of this experience, I’m making my own arrangements so my daughter never has to do this for me. This is no good. Ive lost my life, my career is suffering, my romantic relationship is on the brink and I’m losing friends. I’m depressed and lonely. I’m physically declining. Everything I’ve wanted for myself and worked so hard to build is crumbling.

My final words: DO NOT DO IT!

The biggest thing that surprised me was that all of my family members just checked out. No one visits my mom anymore. She was living alone before and had family around nearby. She moved in with my family and we live half hour away and no one is willing to pick her up and take her anywhere or visit. They all claim that she is too fragile and they are scared. I thought that I would have help from everyone and get a break from being the caretaker. I was wrong. She really isn't that fragile, so its really confusing and upsetting. So, if you are thinking that you will have help, maybe plan for the possibility that you may not. It’s much harder than I ever though it would be. The mental and physical decline is really difficult. And they get very frustrated when they cannot do things and become angry with you for not letting them do things. Their brain say they can but their body disagrees. It becomes mental torture for them and they take it out on the caretaker. If I had the ability to turn back time, I would not have opted to try and take care of my mom in my home. I feel our quality of time together would have better served by placing her somewhere or getting in home help. Best of luck to you!

I cared for my dad during his final phase of dementia. I found that there are certain things that are good investments such as a shower bench, a portable wheelchair, a toilet lift and grab bars and a wheelchair ramp. Other things that helped were making sure the bathroom was warm before showers, hats and blankets to keep him warm while sitting in his chair. We had recliner chair with a lift to help him up. We also had a hospital bed. I was careful to keep small rugs and any other trip hazard out of his areas. I often had to be careful to watch that he would put his lap blanket to the side as not to trip on it if he’d get up to go to the bathroom. I always tried to maintain his dignity when he needed help with wiping and things like that. I would just say things like “you helped me when I was little and now it’s my turn to help you”. The most important thing is to remain patient when the same questions are asked over and over, and not try and correct them if they are certain about something that you know is incorrect. I also got respite care lined up as soon as a could and this is a lifesaver for when you need to run errands etc. If I was out shopping I’d get myself lunch at a favorite place to just to feel a little pampered. I was fortunate that my dad was not usually combative and he was willing to let me help. It turned out to be a very blessed time for both of us and I have no regrets about being his caregiver.

What surprised me the most is how time consuming, stressful, and lonely it can be.