I am in my early 30s. I have been my 90 year old grandmother's advocate for about 4 years. In early 2013 I became her Power of Attorney (durable and health). In January of 2014, she had a mini stroke, and she was placed in a rehab center, where she was then able to go home in late February, but only with 24/7 care. Both me and my younger brother shared taking care of her 24/7, but shortly after my brother got a job and moved away, so I was left alone with my grandmother. Now stuck between a rock and hard place with her care, I agreed to no longer work, and in turn, she moved in with me and my husband in late March with an agreement to pay me as her caregiver.
During the last 2 months, she has declined quite a bit, to the point where I can now barely reason with her. She overlooks her own safety, and when I try to redirect her attention to being safe (or whatever the need is at the time) she gets frantic about whatever is on her mind. For example, she'll stand in compromising positions just to wipe her nose, when she could fall if I wasn't there to help. If I redirect her to sit down and then wipe her nose, she acts irrationally and can't understand that she is being unsafe otherwise. In general, I am totally worn out. I have to pay all of her bills, manage her meds, Dr. Appointments, laundry, monitor bowel habits, handle all of her food and calorie intake, do all bathroom changes, bathing, hair washing, etc, and she complains to me through every minute of her personal care. Plus, me and my husband are trying to slowly clean out her house by ourselves with 50 years of junk, and my dear husband takes care of both our lawns. It's been such a drain on us.
I have nobody in my immediate family for support. My own mother is very ill, and my Uncle is in his own little world and has no concept of what I deal with for HIS MOTHER. My brother and sister live out of the area, and I am stuck in this crappy situation in my early 30s when I am supposed to be making my own life happen with my husband.
I realized that I needed some relief. I contacted our Area Agency on Aging, but my grandmother doesn't qualify for any programs. I enrolled her in a private pay adult day program 2-3 times per week, which gives me 8 hours every few days. I finally decided a vacation was due after a few years of caring for my grandmother, and 5 months of hell with her in my home. I got away with my husband for a week, thanks to a respite stay for my grandmother. When I picked her up, it was like I had no break at all. I feel completely drained again.
I have done all I can think of to do right by her, but as she has progressed, I have been having a horrible time getting through to her. We now have arguments daily because I want her to be safe, healthy, etc, and I try to help her, but she doesn't want to listen and she is constantly doing the opposite of what she needs to do. We NEVER had disagreements in the past, but ever since July, she has been unbearable. I notified her Dr immediately when I noticed her becoming more disagreeable and confused, and we tested her for a UTI, which came back negative. Her Dr said she's just declining/progressing. I also put her on a waiting list for a Nursing home back in February, and she still has people ahead of her on the wait-list. I don't know how much longer I can deal with her. I feel that I have given all I can, and I feel so bad about it. I am trying to be as strong as I can.
Any thoughts on how to be more effective getting through to her or making the situation better in general is appreciated. Thank you for reading such a long description!
You may have to settle for a skilled facility farther away from you. Either that, or hire more respite help on a daily basis. You are in need of a break. I know you love your grandmother, but I'm sure she wouldn't want you to sacrifice your life. You are too young and this is more than anyone could handle. Seek more respite care and check in with us here at the site. We want to know how you are doing. You can do this
And note that once our elders get into their 90's, every one year will be like 5 years when it comes to decline. I've noticed that with my parents in the past year, they have gone downhill faster than the year before, and the year before that.
Freqflyer....thanks for the heads up about your parents. I am sorry you are dealing with this too. One of my grandmother's doctors told me a similar thing, about how they will progress quickly each year...it's so sad to see.
You can only do what you can do. If your grandmother falls, she falls. That's a tough thing to say, but it's not going to do either of you any good if you get yourself burned out and your grandmother has no one to care for her. So step back a bit and keep your fingers crossed (or pray) and do the best you can. And let the rest go. You don't control the universe and you can't keep your grandmother from falling by worrying or trying to get her to act in ways she can't remember. Of course you can put in safeguards (like take out throw rugs, make sure her shoes have good soles, etc.) but you can't make her safe every minute.
Last month I got him a walker that has a basket, seat, and handbrakes.... he loves it... but I wish he would use it on a regular basis. At least now he can get from the front door, down the driveway, to the mailbox and back without a passerby having to pick him up off the driveway.
My parents are always worried about what will the neighbors think if a neighbor sees them outside with a walker or a cane.... [rolling eyes].... I bet the neighbor is thinking "it's about time they used those things".
Both Mom and Dad still "furniture walk" meaning they use the walls and tops of furniture to help balance themselves from room to room.
And when I catch up with her, as she totters towards the bathroom, and say "mother! Why didn't you use your call trigger?" she is extremely ratty and snaps "I did!" Er, no, she didn't. What she will have done is dab feebly at the button and pretend she didn't realise it hadn't worked. And yes she does know how this trigger works, because she uses it fine when it suits her.
Why did I believe her? I didn't believe her, is the truth, because she has been making that same promise daily for more than 18 months, during which time she has had three ambulance trips to ER and numerous more minor falls.
We are wasting our breath, you and I. Whether it is the dementia, or their personality, or its just 'seeming like a good idea at the time' our loved ones cannot/will not/are not going to comply. It's not happening. I am currently in the process of negotiating for an over chair table she can't move and a bed rail she can't climb over (oh Lord!) to prevent my mother physically from getting to her feet unaccompanied, but wish me luck because in the eyes of the law this is a 'deprivation of liberty' and I am going to have to demonstrate that it is in my mother's best interests to be deprived of that small degree of liberty to prevent her from hurting herself. Or, bluntly, killing herself - because sooner or later it'll be her hip or her head, and either would be the death of her.
Listen. Stop talking to her about risk. You are wasting your breath, raising your own blood pressure, making her miserable and, most important of all, getting nowhere. Get the OTs round to have a good, thorough look at the house and at your grandmother's daily routines. They'll identify places for strategic kit like grab rails, hand rails, perching stools and so on; and suggest things like pressure pads, door alarms and what have you which will at least help you monitor what your grandmother is up to. They haven't invented one which will tell you before she does whatever she's planning to do, but I hope they're working on it.
This time last year I was exactly where you are now. I felt INCENSED with my mother. It was impossible to believe that she wasn't, at least partly, being intentionally defiant. I still do feel a vestige of that emotion, especially because she is so plausible when she promises to change. But I know, in my brain, that it is all baloney and that this is a subject that she cannot grasp. You just have to take deep breaths and all the preventive measures you can think of. And once you've done that you have to accept that falls risks cannot be entirely eliminated. And once you've done that, you have to decide whether you are still prepared to take responsibility for her safety or not.
Believe me, give up expecting your grandmother to take safety on board before your head explodes. I'm walking beside you, I really do know how full and sore your heart must feel at this time. Big hug.
She was put on the list 7 months ago...I am hoping she will have a place there sooner than later, but I am now going to consider a group home for her as well.
Countrymouse....thank you for sharing your experience. I am sorry you have a similar situation going on. I did have an Occupational Therapist come and we did a lot of things to help her around the house, but she REFUSED to participate, learn how to use them or follow techniques....she has a stubborn streak. I will learn to be more accepting of these daily challenges and learn to let things be. I feel like it's a natural reaction to want someone to be safe, so I will have to do my best to subtly guide her when needed instead of creating conflict by correcting her...I hope that makes sense. Thanks again everyone.
Trying to handle and care for a person with the needs your grandmother has is really overwhelming and it really takes a team of people. You are doing the right thing by finding a good and safe place to care for your grandmother.