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I am just starting out caring for my grandmother and am considering moving in with her so she can stay at home while she ages. She has had some mobility problems and has memory problems, and falls often. I haven't cared for a relative before and am scared that I won't be able to help in the right way. I don't want to intrude on her privacy. Can you share any tips or techniques that make older people feel cared for and respected?

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One of the biggest surprises I faced was my  family member's apathy and lack of effort.  Being positive and encouraging her just did not help.  She wanted her old life back, but did not want to work for it.  Had to be her way, but there was no magic solution to make her way a possibility.  She spent most of her life getting rescued and she never really had to draw upon the inner strength that we need in times like this.  She wanted everything done FOR her and had no apparent interest in regaining skills to stay independent.   She pushed me to my limit and past my limit multiple times with her demands and complaints.   Sometimes it would be passive-aggressive "oh, don't worry about me" kinds of things as well.    For the record, she was seen by a neuro psychiatrist and other professionals during this time.    Sadly, the best we could do for her was place her in a facility where she can get 24/7 attention and care.  I also was surprised by how many people turned on me during this caregiving time.  Sad that so many "solid" people proved to be anything but that.   The whole experience was really an eye-opener.  And I realized I do not have a magic wand to make it all better.  I wish I did.
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My grandparents moved in with me when they were 100( My parents and siblings were no where to be found) . Grandpa had fallen and broken a leg. The rehab center let him get bed sores. I sprung him out and brought Grandma here too. He qualified for a daily aide and a wound nurse paid by medicare. The women sent were wonderful and trained me for the to dress the wounds. A CNA or aide was always here to do person care in the morning. The wound nurse came in the PM and took care of anything needed then. When my Grandma was unable to take care of herself I hired local women who worked in senior care to come help in the shower etc. Having help for all the bathroom stuff made it easier for all of us. Of course it was not always wonderful. Grandma wanted to moved to assisted living and fussed about it. She was legally blind and refused to wear her hearing aids... Grandpa was never happier. My kids were teenagers and helped around the house and visited with their Great Grandparents. My BF would bring me cooked meals and wine..... We got to know each other as we would never have had the opportunity had they continued to live 3 hours away. My mom on the other hand is not grateful, worse than grouchy and wants to have someone take care of her....... She has driven my siblings away and my visits are becoming less frequent. Fortunately my children live in other states and do not have to deal with her beyond a few "happy" visits a few times a year. I pray I am not like her.
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NeedHelpWithMom Feb 2020
I enjoyed reading your post. I felt the same way. Caring for my father truly wasn’t a burden. Caring for my mother was totally different, very hard.

I absolutely adored my grandparents.

You were a godsend to your grandparents. You truly were. 💗
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In answer to your first question I was surprised how quickly many friends and relatives disappeared into the mist once I was a Caregiver. So called friends would say awful things thinking they were being helpful. As far as tips to help them feel cared for I would say to include them in your life, tell them about what has happened during the day and ask for their input on things you are interested in. Show interest in them and steer them toward memories of good times but don't lock them in the past. Learning new things and hearing about new things helps keep us young. Ask them to tell you about their younger days and really care about what they have to share.
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NeedHelpWithMom Jan 2020
So true. It usually is just one family member doing it all. Not many people are willing to help out.
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Your question is about what surprised us when we started to care for an aging relative. Just a little perspective from the other side of AFTER: Here's my biggest surprise of all. After years of care taking my Mom and living together, having my health take a hit some days, some of my friendships fall away, endless exhausted days and nights, I would do it ALL again in a heartbeat! 27 years together, many sacrifices made to look after her, many tearful nights, some guilt trips, etc etc etc. This afternoon Mom passed away in the hospital after being in for 10 days. My heart is broken and I feel so much pain and loss and hate being in this house without her. What I would give for more with her!!! In spite of the painful difficult times, when you are done, you will be honored to have helped a special relative.
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NeedHelpWithMom Jan 2020
So sorry for your loss, Lisa. Hugs! 💗
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I am curious how you came to be your grandmother’s caregiver. It’s a huge responsibility to be a caregiver.

Are you doing everything yourself? Caregiving is too much for one person.

It is draining to be a caregiver both physically and emotionally. I would not do it if your grandma has resources for an assisted living facility. If not, you could look into a nursing home. Speak to a social worker to help you see what is best for her situation.

Best wishes to you and your grandmother.
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Llamalover47 Jan 2020
NeedHelpWithMom: Your comment - "Caregiving is too much for one person." stuck with me as you're correct. However, sometimes your solo sibling cannot perform the caregiving duty and that leaves you in a bit of a quandary.
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If you're asking what surprised us...for me, it was how frustrating and distressing it is dealing with all the needs and the dementia, which ONLY get worse, never better. I really didn't expect that.

And I had no idea how terrible dementia can be, how confusing it is, and how painful it is to see in a loved one.

It just grinds you down. And there are much, much worse stories than my own on this forum.

I'm surprised at how long she's lived, too! lol

I am incredibly fortunate that many years ago she foresaw that she'd need institutional care, and enrolled in Independent Living. Also, she was tired of all the chores she always had to do, living alone. Wanted a more interesting, social life. She got that.

It's a continuous care situation, so now that she's frail and has dementia, they still care for her. I'm forever grateful to her, because I would never have been able to provide care for her by this stage in her aging process.
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If you are the granddaughter, where are her children?? MY husband and I moved in with his mom in 2003.. that was long before she started having dementia issues or fall issues. This is a big house and we were being moved out of the rental so my husband made the decision to move in here. She was 72 then and now she is 89 and will be 90 in May. she was very independent and would go on train to visit her sisters and go with us to Long Beach(WA) we live in WA state.. She has been legally blind all her life.. Her vision is like looking thru thin sheet of visquine plastic, but she managed. Her health progressively went down hill over the last few years.. She used to go for walks by herself and cook small meals for herself while my husband and I were at work. I work part time house cleaning so am around more.. feb of 2017 she was taking her nightly bath as she was still in her room upstairs and had her own bathroom. She apparently fell in tub that night and I was so out asleep in next room I did not hear her calling or her pounding on wall. She was in tub all night long. In morning I went in to tell her I was leaving for my dr. apt and found her in tub with towels she had wrapped herself in..She has a grab bar but could not see it or forgot it was there. She is a small frame but I still had to call fire dept to have them help me get her up. then in April 30 of that year she fell on her walk. the neighbor saw her go down and called 911. this was not the first time she had fallen but this was for a different reason. After being transported to hospital it was determined she had broken her hip. dr. thinks it was already broken but finally dislocated on her walk.
The care for her after herhip surgery and rehab for a month everything changed dramatically. We moved her downstairs.(no more steps) put in wall to wall carpet and she now is using walker. She does not cook, nor get her own meds nor bathe herself. She sits on bench in tub and I help her..
Do not feel guilty if you are unable to care for her, and as some comments were made it will only get worse.. My MIL's short term memory is nil and anxiety is not as bad since she has been on Mirtazipine which she takes at night. Her appetite is bad and we have to use creative techniques to get her to eat..
she does not watch tv, but wants it on for background noise. My life would be so different if we had not moved in We have some breaks as we hired my cousin and she lived here 6 months until her place became available. Do check out programs to get help for her. We have aid & attendance as her husband was in the military and she qualified for monetary help. There are agencies and other choices to make so I hope you weigh all your options before you decide to do care for her by yourself.. I hope this helps.. lots of shocks and changes have happened over a period of time here and still are. I will be 62 at the end of this month and I wish as much as I love my MIL I could put her in a care facility but she will never agree to it as long as her brain is still in charge of her body which for the most part is..my husbands brother lives about 30 minutes away and only comes for once every 4 to 6 months to visit. And once in a blue moon will stay with her for part of a day so we can get away otherwise my cousin comes to watch her.. don't know what I would have done with out her here for us..
I wish the best for you..
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Don’t go it. You won’t have a life. You must be young since she is your grandmother. Don’t do it.
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One thing that I was not aware of was that my late mother had bowel incontinence. Soon found out after having to wipe bathroom daily BEFORE I COULD USE THE TOILET. Other than that, I knew my mother - a sugar coater.
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As people age and/or get sick, they will lose privacy. This is inevitable. Without knowing everything about your grandmother, has she seen what help in the home she is qualified for? My suggestion to you is to make sure grandmother is tapping into every program she can. If she can qualify for Medicaid now, she will have an easier time transitioning to other forms of care when that time arrives. Long-term care (nursing home) application will be easier, plus she may qualify for an extended rehab period if she needs that in future. Then, consider the way you help her to be a small supplement to her care. In the meantime, there will be CNAs, an occasional nurse supervisor, meals on wheels, and devices (like grab bars and med machines) provided. You should be part of a big team, because her needs will be more than one person can do. Plus, some of these people are well trained to identify when your grandmother may not be able to remain safely at home. Do not think that you can handle all her needs 24/7. If someone was hired from an agency to provide 24/7 care for grandmother, they would only be allowed to be there for 2.5 days. Then, they would be replaced with another worker so that they can go home and rest. IMHO you should consider taking on being responsible for grandmother for 2 to 3 days so that you can live your own life and and maintain perspective. She is lucky to have a loving granddaughter and if you want to help in the best way possible for the long haul you need to pace yourself.
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I just want to share my "surprised" epiphany. I am an In home Caregiver, by profession, and I took on a 99 year old lady....4 years ago !!... When I started this job, I estimated it would be a short term thing, because,, how long could she live ? Now she will be 103 in a few months., Still walks fine, toilets herself. I make meals and give showers. Her dementia is getting pretty bad,, her short term memory is nil., But she has the BEST personality, and can remember every song she knew from 1920- on. She's delightful and funny, and a pleasure to be around. BUT... She is the exception to the rest.,,Make no mistake., you need to read all these answers,, and take them to heart ... These others have made mistakes so you don't have too.,, By the way.... Never, never NEVER assist her to get up if she falls. You think it'll be O.K just once,, but that's how caregivers end up in the hospital, meanwhile the patient will be sitting at home, wondering what's taken you so long to come make her lunch ...Really., call 911 and let the pro's handle it.,, ( don't even tell her,, just do it,, and tell her 'friends ' are coming to help. :) Good Luck
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Shell38314 Jan 2020
That is really good advice! I need to remember to try not to pick up my mother if she should fall. Thank you for sharing:)
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I am 69 and sharing the care of my 95 year old mother with 2 sisters, one in her 70's and one just younger than I. We started this about 10 years ago, thinking that this would be something that would assist her to stay in her home for a few years. We never dreamed that it would last so long or take so much effort now, when we can barely manage our own homes.

I am trying to think of this from both perspectives: that of the caregiver and that of the older person. I could be either or both at this stage. From the point of view of the caregiver, we should have been much more clear with Mom and ourselves about what the criteria should be for Mom moving to residential care. We are doing far more than we would have agreed to and we are bearing the physical price for that. The best thing is that none of us live with Mom, so we can go home and retrieve our lives.

From the point of view of an aging mother/grandmother, I would really appreciate a grand-daughter who would move in for a year or two if my husband were to die. I would want company and a little help with the cleaning, maybe, but no personal care. If that should become necessary, I would want that grand-daughter to help me find a place in residential care.

I think the biggest red flags I see in your description are frequent falls and memory problems. Those can be issues that can rapidly become very difficult to care for. Worse, your grandmother will not be able to accurately assess her own condition. The changes will be gradual so it will also be difficult for you to decide whether this is a bad week or if she is beyond your ability to care for her.

If you have a strong bond with her, you may want to move in for a year or two to be available before and after work, but write down some very specific boundaries and read them regularly. Tell all other family members that this is a temporary gift to your grandmother and that you will end this arrangement at any time that ab or c happens.

Your list may differ, but the list we have for my mother includes: a) Mom must be able to care for her own personal hygiene, b) Mom must be able to get herself from her bed into her chair/scooter by herself and from the chair/scooter into the car, c) Mom needs to take her own medicine, d) Mom needs to be able to feed herself. You might also want to add that you must have the time necessary to tend to your own career and social life. You MUST have these.

If we had started this list properly before Mom got so bad we would have included that she would need to clean her own kitchen and stand long enough to prepare a simple meal and/ or clean up after the meal. From what we now know, we also would have absolutely included that she would need to be able to get up after a fall without assistance. Two of my sisters have had back surgery because of injuries incurred trying to help my mother up after falls. I have had 2 hip injuries sustained while trying to give Mom support. She should have been able to support herself, properly used her walker/scooter, or gone into residential care before we were injured.

Remember what they tell you in the airplane briefing for emergencies? Take care of yourself first, then assist those around you who are in need of assistance. Good luck.
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Crystal95437 Jan 2020
I am really surprised at all the injuries you and your sisters have had. The 1st rule of home-care (if your not a professional) is to call the emt's or fire department to get someone up.. Period. It sounds like you all have done wonderful job taking care of your mother,, but wow.
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Take her to doctor to request in-home physical therapy to help maintain strength in arms/legs. You have to find your routine with her - each person is different. You will be intruding on her privacy because her care involves everything...including those things that she considers personal right now.
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If your grandmother gets to the stage where she needs more care, her family should have a plan in place where she moves to a facility that is capable of caring for her needs. This way you are truly free to visit her and be an emotional support for her.
I am caring for both my parents in their late 80’s who live in an independent living home. I prepare meals, do their housework, look after their meds etc etc. But I can go home and that makes a world of difference. My parents know that I set boundaries. If they need personal care they will need to move.
Caregiving can be all consuming. Be careful you don’t stretch yourself too thin and wear yourself out emotionally and physically.
I agree with others here that if you move in with your grandma then your other family members may check out. All the best!
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What surprised me the most is how time consuming, stressful, and lonely it can be.
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kbuser Jan 2020
I'm right there with you. It really does consume most of my time during the day (and sometimes at night), crazy stressful and yes, lonely. Most of my friends have given up trying to get together because it's so infrequent
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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.
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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!
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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!
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cwinter Jan 2020
Making ones own arrangement is the way to go, whether abandoned by family, or like myself, not having one. The question becomes, how to set that up in a safe, secure way... especially given the human nature of "help" to exploit.
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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.
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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?
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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.
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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.
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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.
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ML4444 Jan 2020
Maybe you want the OP to know that you know she is not planning to ignore her relative; otherwise your post is not helpful, it reeks of placing GUILT on a young person that has NO IDEA what this care entails. Invite friends and family over? Key to a happier person? Please. Friends and family will disappear and they sure aren’t going to help change diapers and pick someone up when they fall. The shock of undertaking caregiving is how quickly you lose your own life..how other family disappear if you need help..how selfish and miserable some elderly are..and how they don’t care if you lose your life, as long as they get what they want. SOME, not all. THAT is my experience. So save the guilt or rose tinted glasses because it’s not reality.
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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
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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.
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lindas12 Jan 2020
This is funny. Very positive for her. :)
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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!
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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.
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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.
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The most surprising thing is that it never occurred to me to run away before significantly damaging my life with no end in sight.
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cetude Jan 2020
I took care of mom for 15 years and it destroyed my life. I sacrificed everything for mom and she ended up dying age 90 but her Alzheimer's was so advanced she no longer responded to the environment and kept alive with a feeding tube. Still she lived a very comfortable life. I felt she abandoned me when she died. Now I have nobody.
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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.
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