My grandmother is 92 and she has dementia. I’m not sure what stage. She normally lives in Puerto Rico but we recently moved her here because there is no one to take care of her. The plan was my mother and sister were going to take care of her in shifts (I have trouble communicating because my Spanish is very basic) I told them this before they brought her. Now she has been here for 3 weeks and I am the only one taking care of her. None of my siblings want to do it (except the oldest but she has a daughter and can only give so much time) my mother works and sleeps when she gets home and my youngest sister refuses. It has been very hard on me. My grandma wakes up through the night to put on clothes or clean or she doesn’t sleep at all and wanders. My sleep is completely non existent. Recently I’ve been in such deep sleep I haven’t heard her get up. She has had two accidents. She did number two everywhere in my bathroom and she has peed on my carpet. Now I am afraid to sleep and am constantly vigilant. I don’t know what to do anymore. My family REFUSES to put her in assisted living and I understand but I am the only one pulling the weight. On top of that I run my household while my mom is at work or sleeping so I have to clean and feed everyone.
Time to stand up for yourself - you don't say if you have an outside job but even if you don't the sit them down & write up a contract that you get paid for your work for grannie & you get time off as well - your mom sleeps or works [that leaves about 6 to 8 hours a day when she does what?] but when do you sleep? - stop letting others be rested & you not - others can pay you if they can't help out & don't accept any weaseling out with 'I'm short this week' .... then they pony up time
They won't like it when their patsy is firm - write out a letter & give a copy to all then stand your ground
I didn’t look into this option too seriously because when I brought up the topic to mom she immediately shot it down and I didn’t insist that she do it.
It is a viable option that would be useful to so many, not just the caregiver but socialization for the elderly.
Those were the reasons I was interested because I couldn’t understand why my mom was content with only me. I always found it odd that she didn’t want to be among people her own age at times. I see that as a plus.
Also, too much togetherness among family members is not healthy. It’s only natural that friction occurs by working on each other’s last nerve. That happened in my home. I don’t think anyone necessarily wants it to happen. It just does.
I found resistance even with suggesting going to the community senior center that offered lunch, crafts and classes. Some seniors isolate themselves. It’s no wonder there is depression among seniors and caregivers. Both become isolated.
You are very kind. Unfortunately, I had to learn certain things the hard way. I appreciate your sweet words.
you are truly an angel but I can understand your situation. If your family members can not physically help then at least financially they should support you so you can hire home health nurses. I’m not sure where you live but low income citizens can apply or in home support services. ( IHSS).
Or even care.com may have nurses aides or people who can come and watch her during the night.
Its time to have a family meeting and everyone contribute what they can. Also, just know that if they know you will continue to care for her and do everything there won’t be a need to help you. You can let them know you are going out of town for a couple days and then do it! That will give them a real idea of what’s involved. Hang in there. Hugs
loose my job.
Mom and sister were going to do shifts....and mom had a job at that time, right? What did she specifically say in regard to how she was going to work shifts. Same for sister - her specific words on how she was going to help.
Mom may work days, but there's no reason she can't spend some nights at your house. Same for sister if she works. If sis not working, then she can slap her name on weekdays that she will be there. It kind of sounds like you and all of them are living in the same house - which might make this a little easier for you.
First thing to address is what they said they would do prior to bringing her here. Second thing to address EXACTLY what they plan to do to keep g'ma at home and out of assisted living.---This means you hand them the calendar and tell them to sign up for their shifts.
Third - if all of you live together - then start making plans to be away from the house when mom/sister are at home. Remind them to listen for g'ma while you are out. Then stay gone a significant amount of time so they have to get up and help. If you do not all live together, you will have to be very clear during the meeting that they said they were going to do shifts and it is not happening (no excuses allowed because they made this commitment knowing what their work hours were before she came). You don't want her in a facility either, but you cannot do it alone and hand them the calendar again. Put down dates that you will be out of the house for a day or a weekend and tell them it will be up to them to figure out the coverage. If they know you're going to be at home, there is really no urgency for them to show up.
Hope this helps them to see the light and pitch in a little.
1 - Decide what kinds of care and time commitment you can provide to care from grandmother.
2 - See what kinds of resources are available for the care and times you can't provide: home health aides, personal care aides, overnight sitter, adult day care programs, assisted living and full time residential facilities. Get prices for all these services. Make a chart of what care for grandmother would look like with "paid help".
3 - Make a weekly chart with time slots that shows what you are able to provide and the "gaps in grandmother's care."
4 - If nobody else in the family were to help, what would you do? Decide now what is your last resort plan for grandmother's care.
5 - Then, have a family conference. Explain the kinds of care you are able to give and the times you will cover during the week. Explain that you never agreed to be full time 24/7 caregiver but are willing to do your share. Show everybody the weekly chart of care need and the chart for "paid care." Tell everybody if no one steps in to provide help what you last resort plan is. Let others decide how they will fill in the gaps: volunteer to help, provide for "paid care", or do nothing (the last one is difficult but does happen). If no good plan comes together to get more help, let folks know the last resort plan will go into effect and stick to a date.
A bed alarm would be helpful to you along with a baby monitor , and a bed rail on the side she sleeps on. I can send you the items I purchased if you are interested. I also bought bed bumpers for the other two sides of the bed, they go under the mattress cover so that she can’t get up from the opposite side. Alarms on the door nobs of the house will alert you if she tries to leave in the middle of the night. She can call you through the baby monitor when she needs assistance getting up. Or the bed alarm will go off if she lifts her back from the mattress trying to get up by herself
From what I am understanding your immediate nuclear family (mom and siblings) live in the states but the rest of your grandmothers children and their families (so rest of your mom’s family) still live in PR where GM (grandmother has been living all her life) but you mentioned somewhere that “they” raised you, do you mean your grandparents and was that in PR? I’m just trying to get the big picture here.
Looks like your mom has POA for GM does that include MPOA and is it durable, does anyone else have any of these responsibilities and does GM have medical directives? You are living with your mom, GM and 4 other siblings? Were you planning to stay or move out on your own when this new job starts, prior to GM moving in?
When your mom and sister, who it sounds have all the authority and have taken on the care decisions, committed to caring for GM at home in the states and made the decision to keep her at home what was their plan? Did it include you and did you tell them what time you could and would commit or did you pitch in because you wanted to help after GM moved in and it seemed easy at the time? I know all too well how easy it is to take various tasks on because it feels like a minimal addition at the time and we want to help the people we love but suddenly realize we ended up taking on much more than we realized, especially when you add them all together. I also have seen how natural it is for others to forget about a chore or the drain it might be when they know it’s being taken care of and well, it’s easy to get lost in the day to day responsibilities of our own lives and forget there is something else we should be doing to share the burden because its being done so well. My guess is you took on too much up front, well meaning but your mom and sister never really took on the jobs so may not even have a sense of how much work it is or how life disruptive. I know you are taking care of mom too by being responsible for GM overnight, every night but that isn’t sustainable for any one person when the patient has the nighttime habits your GM does, you probably didn’t realize how much she might be up when you took it on but those are the cards they (mom and sis) have been dealt. So what would they have done if you hadn’t taken these things on up front? What if GM had moved in after your job started so you didn’t have the time you have now? They would have started off probably taking shifts with who was responsible on a given night but at least experiencing the need and I think you need to gently move them back into that experience and responsibility, you did take it on so you share in some of what created your current dilemma and I think everyone, you included had and have the best intentions you all just didn’t know to plan ahead a bit better. Took an “it will all work out” attitude instead of a proactive lets try plan A and have a plan B back up, communicate with each other attitude instead as often happens in these immediate need situations.
I would suggest letting your mom and sister know that you wont be able to cover GM these night and or days this week and just leave it at that, if they don’t pick up the slack don’t you do it eater and they will once they feel the repercussions of it not getting done, thats why they moved her close in the first place right, no one was doing the things that needed to be done?
Then after they have had a week or two of experiencing GM’s real care needs you could suggest you all sit down together to plan out the week or the month, let them know your schedule and what days you are available to do what not the days you aren’t anymore the days you are because that switches the prime responsibility for making sure GM is covered to them and away from you which is where it is now. You are still as willing to HELP as ever not but not be primary.
She is now 75 & does not know me!
You can visit her any time you like- so don’t give yourself a guilt trip! People who have dementia do not get better !
She will be safe from wandering, falling or hurting herself
in any other way! You have to think of you & your health as well! Good luck!💕
It is way too much for one person to handle- especially with dementia !! You have to take care of yourself!!!
Second, she will ultimately be much better off and better cared for in a facility.
Third, my philosophy is "If you aren't participating in the care and decisions, you don't get a vote."
Best wishes!
That's It.!! Or after the third week, If family is near by, Just say : Are you going to me home this weekend? Yes, you mind if I come over? Take Grandma with you. My shift is over, it's your turn for a few weeks. Have fun, I need to sleep for a bit. make it a rule, everyone gets 3 weeks with grandma, if they don't want her in a home.
we feel guilty when do it. But if you find a good one you will be fine. You said you are about to working. Even if she get home health care in the day. What aboutnight when you need to sleep.
. My grandmother suffers from dementia as well. The place she is at is wonderful actually it is close enough that I can walk from my home to see her. My grandmother have living children. Before she went into the nursing home I still did everything for her.But when she was herself she told me she would understand if I had to do it. Because I had to put my own mother in one. She was the one I talk to before deciding to place my mother in one. They are together.
We also purchased a camera for her room, like they use for nursery's. That way if you do wake up you can check on her without actually going in the room.
I too take care of my mom plus work full time. She goes to an adult daycare during the day geared towards ALZ/Dementia. They keep them very busy. That might be something to look into. She has always been there for me so I will always take care of her. It's just the way it is for me. Not judging anyone. I know were all doing the best we can.
I hope your family steps up soon. All my best.
If you can't get the Skilled Nursing situation to work out, for whatever reason, I suggest you move OUT of the house and leave the full time and unreasonable care giving duties to the rest of your family members.
You've done enough.
Best of luck!
Does have any money? If not, she'll have to get aid and go to a nursing home. Or if she does have money, use it to hire home health aids to do some of the work. You can NOT do it all yourself. Since you are, your family must feel like "whew, we're all set!". But NO they are not all set. You are unable and unwilling to do all that needs to be done. It's unfair and must come to an end. You have to be strong and make a plan and stick to it. With love, of course.
Ask mom to sit down with you and talk this out. Don't let her or anyone else bully you into continuing with all this work and responsibility.
Why are you all so terrified of abuse? Of course, it could happen, BUT I think (hope!!!) that it is a very small minority of the time. One way to try to keep the possibility of this down is to have family visit regularly, at irregular times to keep an eye on things. I would keep my eyes open but I would also trust the caregivers as much as possible so that you can have peace of mind.
Whew, good luck. You need to get on with your own life. Mom and sisters may not be happy when you stand up for yourself but remember that they first have made you unhappy by dumping grandma in your unwilling lap!
You are very welcome. I don’t know how much I have helped but you can vent here anytime. We will do our best to help you.
You said it all. You have no idea how many times I said exactly what you just said. I want you to read what you just wrote to me. Read it again please, “I feel like I lost myself.” That was me! I have said that a million and one times and you know why you feel that way? Because it’s true. I completely lost myself. You are experiencing this too, as have many other full time caregivers.
You recognize this. I did too. My problem was that I was in complete denial about my situation. I truly thought I could do it all! I convinced myself that I had to do it.
Okay, I also felt guilt at the thought of not doing it. I had a range of emotions and I am sure that you do too. Some were my own feelings and others I had been influenced by others. I am in therapy and working on personal responsibility so I am trying not to place total blame on others. Of course we all play a part in things but in the end we must make a choice. By the way, not making a choice is a choice too. So if we deny or keep our heads stuck in the sand it is still a choice.
What is most important to you? Grandma’s care? Grandma will be cared for and yes you can visit as often as you like. Your future? That’s important to you, right? Your grandma would want you to have a promising future, wouldn’t she?
You sound so loving and kind. I would be proud to call you my daughter. I have two daughters of my own. My youngest one is near your age.