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I'm the 63 year old son of my 98 year old Mom that I have taken care of for over 4 and a half years 24/7. As of the last month, she is now in a long term care facility. Whenever I go to see her, she just wants to know when she's leaving (Blind, Deaf, Dementia and High Anxiety ). The staff say she does better when I'm not there. It's not that she's passed away, but like "once removed " and I don't know what do I do now. Get on with my life? Turn my back for her, and me to accepting she is there now? I hope someone understands...

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You are her complaint department, this is very common, most want to leave...at first. It is wise to cut back on visits and phone calls so the patient can acclimate to their new surroundings.

Yes, it is time to move on with your life, visit her, if she starts.... leave... telling her that when you receive a letter from her doctor(s) stating that she can return home you will take it under consideration...the doctor(s) will never write such a letter.

We care takers understand, my step father and his wife said they want to move to another AL because they don't like the food...they didn't like the food at the previous one either...Ah, no you are staying where you are until you go to the happy hunting ground.
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Don't turn away, don't stop seeing her. Take a step back & think. If I was in her shoes how would I feel, what would I want, what would I need. Think about this for a day deep inside yourself. I'll check in sometime tomorrow. 🕯
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lealonnie1 Dec 2019
His mother is VERY old with advanced dementia..............what on earth are you asking this man to 'think about this for a day deep inside yourself'??? I seriously hope this is not some guilt inducing comment with you 'checking in tomorrow' to see if he's decided to take his mother out of Skilled Nursing.
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I think you need to give your mom time to adjust to her new environment. If she's doing better when you're not there, cut down your visits. You are not 'turning your back on her', but allowing her the time she needs to adjust. She's in good hands as you are no longer able to care for someone this old, with THIS many issues! It's amazing you've been caring for her for 4-1/2 years, that's very commendable!!

You can always go visit mom without her knowledge.......in other words, go check on her from afar to see how she's doing. Check in with the nurse, etc., and make sure all is well. When you do go to visit, take her a treat or a small gift and let her know you love her. That's all you can do. Let mom know it's doctor's orders that she's cared for in this new and safe environment. Like DollyMe said, when he writes a letter releasing her is when she can leave.

We care givers all understand how difficult these decisions can be. But at this stage of the game, you need to keep HER safety and care in mind, as that is the most important thing. Do NOT let ANYONE guilt you into thinking you've somehow made a 'bad decision' here. You haven't.
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I think it's good you see her, but not every day or too often.  You've got to move on to the next steps in your life, too, not having her there.  Though blind, deaf, and suffering with dementia, she still knows the touch of your hand in hers & on her face, that you're there ~ comforting her to know you're still nearby, visiting, watching out for her, bringing her little fave treats & gifts.

When she wants to know when she's leaving, just say the dr. will let you know.  It's very hard cause many cry when we arrive and when we leave.  But they're usually ok once we leave, according to workers I've talked with, and their happy voices I hear on the phone later.  It's a sad time for everyone, and my heart goes out to you both.

Try not to be hard on yourself whether you see her as often; maybe once a week or every other week; you decide, not workers.  You're both now going through big changes in living arrangements and will miss each other's companionship.  Enjoy every moment you do visit, and know you've done your very best, made the right decisions, and made life great for your sweet Mom.  But for you, she may have had no one to care for her. 

Take care.
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So after thinking about the situation what did you feel?
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You are her support system even when you are not in her presence. It is not a case of "turning your back on her". Let her transition into the next level of care she needs and give yourself permission to transition to the next stage of your life.
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It is a blessing in a way she's as old as she is and the age difference between you two isn't big
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I went through the same thing with my grandma and my father-in-law. When I went to visit them, that was the first question out of their mouths: "When am I going home?" or "Are you here to take me home?" or even the statement "Oh, good, you're here to take me home." Just the look of hope and pleading in their eyes was the worst thing I've ever had to endure,

It does get a little easier as time goes by. It helps to remind yourself daily that she is where she needs to be, where she can get the best care. I found that the best way to handle that inevitable question at every visit was to say, "We have to wait until the doctor says you are well enough and strong enough."

Prayers and comfort to you in this difficult time.
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herdingcats Jan 2020
That is a very kind answer. I feel so very fortunate that my memory-impaired MIL rarely asks these heart-wrenching questions about "going home", and never begs. That must be so hard to hear.
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Before bringing my mom to my home I had helped my friend care take her mom at a nursing home for several months. I was there 2x a day breakfast and lunch to do the stuff the nursing home neglected. Brush her teeth, wash her face in the morning. Make sure they were not leaving her wet etc.. they are always understaffed
She always wanted to go home and would beg sometimes it was heartbreaking. I would tell her we can do that I have to get permission, just sit tight and I'll get back with you on that. She never remembered I told her that before. I got even braver with and said you get to go next week, you continue to eat well, like you have been, and they said yes,!! yeah!!! you have done so well.
I'm not taking care of her since my friend now has more help from her family. Last time I was there she didnt know me at all, so I got to be her new friend. :)
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gdaughter Dec 2019
yes, there has been much written on people with dementia making "I want to go home" statements and how to handle it. The first time I heard it, it was when mom was in the hospital and had needed an emergency appendectomy, so it made perfect sense, plus she as more functional then and I wasn't suspecting dementia at that point as much. But a year later on a visit to her beloved good daughter in FL, although the journey went fine, once there it was said...she absolutely could not stay for the planned 10 days or so. Was distressed about that, had bills to pay...finally by accident my sister latched on to the comment and began subtle lying about how she was going home "the day after tomorrow". That concept was acceptable to mom.
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This is what is now commonly known as the long goodbye, and a good many people on this forum know what this is like. The body of the mother you once knew has been hijacked, and is inhabited by a new entity - neither mother nor friend nor stranger.
Perhaps my experience might give you some direction. I am currently in a similar situation with my mother in a memory care unit suffering at least 3 types of dementia as well as other health issues. Sometimes she knows I am her daughter, sometimes she hates me, sometimes she ignores me, always wants to go home, but has no idea where that is or what it looks like or even what 'home' is. I live a long distance from the facility but visit every few weeks, meanwhile my siblings visit a few times a week and get the same responses.
After 9 months in care and deteriorating rapidly, we are starting to curb our visits to our mother because, like others have experienced as you are currently, those visits tend to upset her more than being useful. We feel for the wonderful carers and nurses who have to pick up the pieces after we leave.
My suggestion is to start letting go of your mother slowly, make the visits less often if you are comfortable with her care. By all means make regular phone calls to check on her welfare if you feel the need. Gradually start picking up the pieces of your own life, or find a new life if you feel you have lost the old one.
Believe me, there are more people on this forum that appreciate first hand what is happening to you, but will probably not respond. Just know that we do understand.
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gdaughter Dec 2019
I think when someone elaborates and conveys it as well as you have, others who understand don't feel a need to be repetitive:-).
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Soon, she may forget her home. My mom did. Be strong, knowing she is in the right place. If she believes in authority "the doctor says..." is always a good answer to the going home question.
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You’re definitely in a difficult situation but I don’t think it’s unusual. I don’t know the reasoning behind it but I went through the same thing with my Mom. I suggest you talk with the staff social worker for suggestions on dealing with it. There’s a possibility she may blame you for her being there and as unfounded as this may be that’s how she may see it thru the clouds of her dementia.
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Great replies, so good to read through others’ insights in a row, again - common theme, I personally benefit from hearing about it over and over. I’m in the same situation.

I’d like to add or echo, that YOU make the decision on how often you go, how long you stay. The staff is advising you, and it’s worthy advice because they see this situation more often.. but ultimately this is your relationship and you can feel it out for yourself.

Lately I’ve noticed that my mom’s ‘go home’ thing includes that she has to be ‘free’ - to leave, roam, run, it varies. I can’t help but to be touched by the spiritual undertone! They want release, we’d all want release. Bless them - and bless you advocates and caregivers!
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It's true that at first your mom may not adjust as well if you're constantly there, so you may want to give her room/time to adjust. But please never stop visiting totally. (For one thing, it keeps staff on their toes if they know family are involved.) You now have more time for yourself, which is great. But moving a parent to a nursing home isn't like putting someone in a coffin. Don't be manipulated into guilt for moving her to this safe place, and don't be manipulated by less devoted types who tell you your mom doesn't need your visits. She no longer needs you 24/7. In time you'll find your own tempo regarding how often to visit, how long to stay. Your mom will on some level know you and take great comfort in your visits.
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I understand even though I never went through what you're going through.

Let your heart guide you. If her constantly asking about when she can go home bothers you, than you have to weigh this against not seeing her again.

Personally, I'd rather have to do the 'white lies' and see my parents/DH again - but we're all different.

Just a thought - but maybe the staff isn't telling you to stay away? Maybe they're trying to explain that she isn't agitated most of the time so you won't worry so much? Again, follow your heart. 63 isn't old and you do have a right to live your own life. But how will you feel regardless of what you decide? Make a Pro & Con sheet and maybe that will help you to decide what to do and be doing.

Bless you. You sound like an awesome son to your mother!
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I’d be a bit weary of staff implying you should not visit. You are also there to monitor. Try and see if still going by and checking in on her care often but not always going in her room will ease her anxiety.
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BetseyP Dec 2019
I agree w/ Gigi. Patients that have frequent visitors tend to get better care. When my Dad was in Memory Care my mother and I each visited- separately- almost every day. Staff never knew when one of us was appearing on the unit. I think it made a lot of difference in his level of care.
An interesting thing that happened in the "when can I go home?" period with him. My parents loved to travel and it turned out a train ran right in back of the home, lots of train sounds. He loved hearing the train and began asking when we were going on the train, buying the tickets, etc. For me it became a metaphor for his journey "home" and I think it did for him also. (He was intensely religious, a clergyman.) It became a joyful way to talk about why he was there and where he was going. And hearing the train go by a few times a day punctuated that for him. Happy New Year all us caregivers.
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Go anyway. Keep your eye on the staff. Ask to see her chart. Hang out to watch how often they tend her. Visit with another patient who has no visitors. Show up at odd times unexpectedly. She doesn’t need to know you are there every time but the staff needs to know you are watching
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herdingcats Dec 2019
Yes! If their only concern is that you are disturbing her, then don't necessarily let her know you are there. But go anyway, several times a week for short periods of time, at different times of day, if possible, so that YOU can see how she's being cared for. If she seems to be having a good day (or it's a good time of day for her) maybe then let her know you are there and interact with her. Otherwise, make friends with the staff and let THEM know how much you appreciate her care.
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I would not stop going, but maybe go a little less often and keep your visits brief. Also certain times of the day may be better than others. My Mom with Parkinsons and Dementia suffers from the sundown syndrome, and I find if I go during lunch the visit is much more pleasant than the evenings.

Also, someone else made a good point that perhaps the staff is asking you to stay away because they don't want you to see some of the goings on in the facility. I hope that is not the case but you never know. However, I do know that any facility will make more efforts to stay on their toes with a resident if the family remains engaged.
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I’m sorry you’re going through this. I know that seeing my mom in a nursing home was the hardest thing for me, even though I knew it was what had to be for her care, it was never easy. Please continue to visit, you are your mom’s advocate as she lives there and the staff needs to regularly see that she has someone who is watching and that she’s a resident that is cared for. You’ll have to find a new normal for how often those visits happen, and don’t impose any guilt on yourself when you’re not there. You’ve been a great caregiver, your job in that is different now. It’s also time to develop or reignite hobbies, do things your enjoy, spend time with others who give you joy, and consider what you want the rest of your own life to look like. I wish you blessings in this
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I feel for you. In September we moved 91 year old, mostly blind and OCD MIL into a dementia care facility. Prior to moving there she would ask jokingly about moving in with us. In prep for the move, the staff advised that we be there the first day to get her settled and then not take her out for the first while to allow her to get used to the routine. As others have posted, it seems that these facilities ask for time to allow the resident to settle in. Plus, a benefit of these places is it takes the 24/7 care burden away from family caregivers. So, as others have said, i recommend you start rebuilding your life with new routines focusing more on you and including time to visit your mom, if that is what you want to do. I do think it is a good idea to give the facility some time and space to ease her into the routine. If you want to visit during settling in time, I suggest you keep your visits short and allow the staff to do the care, even when you are there. What we thought was nice was being there at lunch a couple of times to help her strike up conversation to get to know some of the other residents. Her two sons have her to their homes for dinner once a week each. 3 months in she has found a rhythm . She spends a lot of time in her room alone but she does participate in some activities, has formed relationships with a number of the care workers, she goes for short walks around the floor on her own, she is interacting with other residents, she says the food is good and she is no longer asking to move in. Because we visited over lunch we know the names and a bit about the personalities of her meal mates so we can use that info for conversations with her. Do what you feel is right in your circumstances, and I suggest you consider the staff info as advice not as mandates.
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GuiltAndSorrow Dec 2019
Great advice. I wish I had known about this site when mom first went to long term care. Those who have experienced these issues first hand are so helpful.
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Wondering how often you're going and if you want to go or not? Tough situation. You sound like a very caring son...and no mention of any other family involvement. Is the staff dedicated and trustworthy enough to believe? Certainly you have every right to pop in as desired and keep an eye on mom. Maybe the requesting is a "phase" that will fade out over time, considering she has dementia. Perhaps some medication in consult with her MD to ease the anxiety if all are willing? If you opt not to go as often you can still call as often as you wish to check in and see how she is doing...
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My Heart goes out to you Respectfullyour as I know from your Post how dedicated and Caring you have always been to your Mom as you love Her
very much, and if I were in your shoes I could not stay away either. I would
suggest you continue visiting your Mother but less often.
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It appears her anxiety goes up because she thinks you are there to take her home. If it were me, I'd talk to her doctor about anti-anxiety medications. You could plan your visits so that the staff could give mom medication an hour before you arrive. Just realize that mom may be sleepier and slower when you visit. Talk with staff about how long you plan to visit so they can engage her in a diversionary activity right before you leave.

Question: How often are you visiting mom? Daily visits are probably a little too difficult for her. Weekly visits should be manageable for her. I don't think I could deal with monthly visits.
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My mom, who is only 81 yrs old has dementia, and has been in an Assisted Living Facility for a little over a year now.  With dementia, she has her good days and her bad days.  Her bad days are typically related to when she gets a UTI (Urinary Tract Infection).  UTI's in older females makes them so much more confused.  And I would get the same question "when am I leaving, when am I going home."  So make sure the LTC facility checks her for UTIs and make sure they are treating her right and getting her involved in activities.  I actually have a camera (Arlo) in her room to make sure she is treated right and to make sure she's not sleeping all day.  And legally, you have to tell them that there's a camera in the room.  If by long term facility, you mean a nursing home - than most likely they won't allow cameras.   But whatever you do, don't take it to heart when you feel "once removed" - it's all part of her Dementia.  And also don't drive yourself crazy by visiting her every day - once a week should do - you should not feel guilty.  Hang in there - I know it's not easy.
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I don't think it was very nice of them to tell you she does better when you're not there.
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lealonnie1 Dec 2019
It's not about "nice"......its about reality and what's best for the resident! Lots of people fare very badly after a loved one visits and it's imperative to communicate that truth so everyone can work together to make the resident happy!
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As many posters said, your visits don't have to be at either end of the pendulum. One end not seeing her at all, the other end being there all the time. There is a happy medium. She does need to get settled. Sometimes when they want to go home, they want to be younger, healthier, have life like they did when they were young. Please don't feel guilty about not seeing her every day. I would encourage you when do you visit, to go at different times of the day. It seems to work out better that way.

My Aunt had to go to assisted living and she kept wanting to go home. She couldn't take care of herself so it was "When the Doctor says you can, then we will make arrangements". She was almost 90 and mostly in a wheelchair. Finally, after about 6 months, she admitted she needed help with her shower and she knew deep down in her heart she couldn't go home.

I recommend you get a life now. Take a few minutes to decide what you want to do. Do you have a bucket list? Do you need to go back to work? If you don't need to go to work how about volunteering? My husband has Alzheimer's and right now he can be left alone. So I volunteer with the local Sheriff's Department. One of the great things is I don't have to be there at any specific time. For example if you volunteer at a hospital or library they usually want you there at specific days and hours. With the Sheriff's dept, if I have time I can go, if I have something else to do, I pass. Example: Last Saturday night, we had a DUI checkpoint. I was free, so I went, if I didn't want to go, no problem.

Mainly, start taking care of yourself. See your Mom, when you can and be her son, not her caregiver. (((Hugs)))
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herdingcats Jan 2020
Great answer!
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Since she does better when you're not there, perhaps you can "catch a breath" for yourself/give yourself a rest. Best of luck.
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It is so hard when they have dementia, but to add in being blind and deaf as well makes it so much harder! Our mother also has dementia, very very bad hearing and is being treated for macular degeneration (I push to continue the treatments because I don't want her to lose her eyesight too!) I have been fortunate in that she has never asked me to take her home. She did hound my YB every time he visited. She has also many times asked staff to call her mother or my brother but they work around it. You can try the doctor must approve suggestions made, but understand you will have to repeat this, often! Then try to change the subject, direct her attention to something else (a snack, a drink, a walk around the floor.)

Since it has only been a month, the pleading to go home (and possibly other complaints) are very common. Some do get better about that, some don't. There is nothing you can do to change that! I would not let that be the deciding factor for visiting. For a little while longer, try to curtail your visits (if you were going every day, try every few days or so) or stop by to observe without letting her know you are there. With the latter option, you can see for yourself how she is doing. If she seems to be doing okay, then you just have to get used to her asking you to take her home and find ways to change the subject during your visits. Since she is already anxious, perhaps try a very low dose of anti-anxiety before a visit, OR try visits at various times of the day. Some people are better in the morning and have less inclination to complain/ask to go home. Usually afternoons and evenings can be tough, but it can affect others at different times of the day. If you can find a time of day when she might be less inclined to do this, make that your time to visit!

You've done a great job caring for her. Don't let this get you down. It is common, and has nothing to do with moving her to LTC. Some people even ask to go home and they are still in their own home! Hang in there!
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Im very very glad none of you will ever take care of me. If ever so I would be more then glad to pass away asap. You all need to have to care for someone for over 15 years basically on your own & good forbid your parents would ever turn there backs and so forth on you when you were children. You all need to start talking to God & I'm appalled to all of your response s. God bless you all. 🕯🕯🕯🕯🕯
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disgustedtoo Jan 2020
Tad judgmental there Meg523. What exactly has put your ruff up? Putting someone into LTC? Suggesting to cut back visits until the dust settles? NO ONE has turned their back on anyone here or suggested it. Sometimes we can't physically care for a LO, so we have to rely on a facility. Sometimes there is an adjustment period. This man is feeling bad about the situation and YOUR comment is NOT helpful. He is struggling with what to do (the staff comments almost imply he should stay away, but most here have said no to that.) Your blather is judgmental - you do not have all the details about his situation or anyone else, and have no business posting garbage like this.

Just because YOU were able to do the care-giving doesn't mean we all can or even that we should. It is a personal decision, based on many factors, NONE of which means turning our backs on them. We can still care for them in our own way and advocate for them when resorting to using any care facility.

Not that it is any of your business why any of us might not be able to provide the care, and I can't speak for others. I can tell you that most mornings for me are very painful, and often I can't stand straight, bend down, or carry any weight - at my age and with my condition, just HOW do you think I would be able to assist my mother, who outweighs me by at least 30# and won't stand/walk without assistance? My bathrooms are too small to make handicap accessible (and there is no money to change anything) and the only way in/out is a full flight of stairs (with landing and turn, so couldn't even put in a stair lift if there were funds for it.) I did NOT turn my back on her and did the next best thing for her - work out the best care for her. This started with keeping her in her condo with aides, but she refused to let them in after a few weeks. Next was to find a nice MC facility which was closer to me (she was 1.5 hr away in the condo), so I could be available when needed. I took over her finances to protect them, have managed her funds so well that despite having to take a good sum every month for the balance of the rent, it is like it hasn't been touched. I manage her medication orders, buy her supplies and deliver it all. Until she stopped walking, I managed all appts and took her to them. I never took and still take NO PAY for doing what I do. I am there to see that she gets good care and has all that she needs, without having to jeopardize my health and well-being any more than it is already. What do my brothers do? One = nothing. The other has taken over one transport at my request as it is outside the area the facility will cover - 4 times a year to ensure she keeps her sight, but he is not happy about having to do this.

So, until you have walked a mile in everyone else's shoes, keep your opinion to yourself, please. Thank you.
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Responding to Meg25, my direct response is not appearing on screen;
If I kept caring for my mother at home just to begin with I would need: hospital bed that folds to the floor, plus thick crash pads all around, so when she rolls out of bed she only 'falls' about 8"; a swing lift to raise her off the floor onto the bed, into her lift chair (which would have to be purchased); bed alarms to alert me when she has rolled out of bed; an additional person to operate the lift, and if mother is in an aggressive mood, a third person to pacify her; a stand up lift to raise her out of bed, wheel her to the bathroom which will have had to have been totally renovated to facilitate transfers to the toilet and shower, again requiring an additional person to aid in the process; medical professionals who can do home visits because mother is so aggressive and disorientated she could not handle the half hour drive to surgeries and hospitals; locks on all cupboard doors so she could not help herself to medications, scald herself or burn a kettle dry; turn the gas on; bar on the telephone so she could not call the police 30 times a day during her semi-lucid hours; locks on all windows so she could not crawl out and over windowsills; deadlocks on all external doors so she could not wander (she sits in her wheelchair and propels herself around using her feet); a chain on the refrigerator so she cannot empty the contents onto the floor in a tidying frenzy; locked doors so she cannot access the study to rearrange files, remove books from shelves and so forth; remove all pot plants from the house to prevent her upending them or tasting them..........need I go on? Yes, I will.
This does not include dealing with choking episodes, aggressive episodes, uncontrollable crying, sleeping almost around the clock then not sleeping for a few days at all; knowing when, and when not, to give pain relief when pain cannot be articulated; fighting her to at least have a sponge bath when she has refused a shower for up to a week; dealt with her abuse, both physical and verbal; tried for hours to get her to eat and drink when she insists she is being poisoned; trying to get her to take her daily meds when she says she does not need them, or the chemist has given the wrong drugs, or I am trying to kill her; locking away the knives because she has threatened to behead everyone; and let's not even go near dealing with her refusal to have her soiled and wet incontinence garments replaced and at least have a cursory wash.
That all would have to be done in conjunction with running a household where I am already a carer to my husband, attending to shopping, financial matters, general household problems, attending to my own personal health issues, medical appointments and so forth.
That, Meg523, is the reality of advanced progressive dementia. I challenge you to deal with that 24/7 let alone for the 15 years you cite. There is responsibility and there is stupidity when it comes to dealing with this situation. The martyrdom that you espouse is not an option.
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