I feel I am growing increasingly impatient with my 84 yr old mom with Alzheimer's disease. She lives on her own in her own home. She has said she would rather go be with Dad (in heaven) than leave that house.
I'm growing impatient with what seems to me to be laziness and not trying to help herself (eating, showering, enjoying her 2x/week caregiver). She constantly complains and worries. I know it is the disease, but sometimes it is just incredibly hard to have patience.
Related to the caregiver household chores post: I do not expect at all chores be done. However, it is nearly impossible for Mom to NOT expect it. She can't stop complaining and relax and just enjoy the company.
Good luck.
A caregiver coming 2 times a week is not nearly enough for your mom as she really needs full-time care either in her home or in a facility, as it is now very dangerous for her to be on her own as much as she is now.
You cannot trust a person with a broken brain to be able to know what to do in case of an emergency or even just with daily living. Sad but true.
All of us that have cared for or are caring for a loved one with dementia, if we're honest will tell you that we have occasionally lost our patience with our loved one, as we're all human.
But again if this is ongoing with you it may just be that you're really not understanding what dementia all entails, and that's were educating yourself more comes in handy.
you need to focus on yourself and your daughter. Your happiness is important. you’re in the prime of your life and should be able to enjoy it.
Truer words were never spoken!
Get the book Understanding the Dementia Experience by Jennifer Ghent-Fuller o Amazon. You'll gain a better understanding of mom and where HER head is at now. And that you have to meet her where SHE is at, in her reality. Agree with her complaints and then distract her. Understand that her mind is jumbled now and it's hard for her too, as well as you. She wants sweets most likely now as her tastebuds crave them as they change with AD. Try foods like yoghurt and fruits which taste sweet but aren't junk food. Smoothies, things like that, with added protein powder. All my mother wanted was ice cream.
Good luck and keep in mind we are on your side.
If she gets mouthy and demanding with the homecare worker that comes twice a week and expects beyond what she is paid to do, the homecare worker should be told by you that she does not have to tolerate the behavior from your mother. That it's all right if she tells her 'no'.
There's really nothing you can do about the complaining other than tell your mother that you will not listen to her complaining. If she cannot control herself you will stop calling and visiting. If she's in the early stages of her dementia she still has self-awareness. If not, then you will have to limit your phone calls and visits to her to maintain your own mental health.
Really, it sounds to me like she should be in assisted living now. She will get socialization because they have activities going on. If she chooses not to, no one will force her. There really is not much you can do about her laziness, the worrying, and constant complaining other than to leave her to it and protect your own mental health.
As for the refusal to shower, she might be more receptive to doing it if you are also there with the aide.
My brother and I swooped her up, moved her near us in Fl, a nice AL facility, she loved it, activities, bus trips, meals cooked for her, laundry done, room cleaned and more.
So after 10 years of trying to get her to move out of her home, she says to us "I wish I would have done this 10 years ago" go figure.
She was no longer alone at night, her fear let her, she enjoyed being with ppl her own age and the many activities.
She died last month at 100, having spent 6 years in AL, we brought hospice in 2 months before she passed, she loved that too, all the attention made her day!
Your mother is beyond helping herself, my mother did not have dementia yet her mobility was impacted as she aged. She is like 99% of other elderly they all want to stay in their homes, she has no idea what is offered today in AL, how about taking her around to see some of the facilities in her area?
I wish you could have seen the sights that I saw when I visited today. Kind caring aides who have nicknames for residents, give them a hug when they need it, and are always in good cheer. No tired family caregiver who didn't sleep the night before. No anger toward residents. No grudges. Just goodness.
The director came through to fix one guy's wheelchair and sat down at the table with him, his table mates, a visitor, and two wives. Director always has something friendly to talk about. Today it was asking them about movies they'd seen. One wife had just come home from a trip. She brought pictures.
This is SO much better than sad, lonely old people wasting away in their recliner, and family caregivers who didn''t know how much they were taking on when they said, "No, Dad, I'll never 'put' you in a home."
Get educated on the type of dementia your loved one has and the expected journey he/she will have. When you know what behavior to expect and at what point in his her journey it will change... it becomes easier to recognize what is disease and what is individual's personality. At some point you have to drop your expectations of what he/she should be doing and accept whatever is the current state of affairs. Most of it will be disease-related. That helps take you out of a position of judging self-neglect/laziness/carelessness... and more into an acceptance of whatever is current.
Be observant and enlist help. Notice that the house needs more cleaning - get volunteer help or hire a housecleaning service. Notice things need fixing - get a volunteer or hire a handyman. Notice that the hygiene, diet, medications... are slipping, then get help for each task. Ask for volunteers from family, friends, members of faith community, youth organizations... and check for hired help through home health care agencies. Seems your mom's goal is to live in her home as safely as possible and maintain her health. If she is not safe and/or the situation puts her health at risk, then she can no longer live alone. If there is not enough volunteers or funds to help her 24/7 at that point, it would be wisest to help her into an assisted living facility that transitions as her needs change.
Second, if you are maintaining your household and you have a family frankly taking care of her is difficult.
I get getting impatient. It is difficult trying to do the same thing day after day and she keeps doing the same thing. She is not trying to do this to *piss* you off, she is doing things because her brain is not working properly.
She no longer has a choice when it comes to her safety and well being.
If you do not have POA (it may be to late for that if you don't) you may have to seek Guardianship.
This can be difficult, time consuming. If there are no other family members willing to take this on the court can appoint a Guardian. This will take all the decision making out of your hands though.
The best thing to do would be consult with an Elder Care Attorney and determine what the next steps would be.
Selling her house to pay for her care would be the primary thing.
Or if mom has assets paying for a caregiver to do most if not all of what you have been doing is a good start. Maybe with some of the burden off your shoulders it will help you more than you realize.
Patience? Patience is the be-all and end-all of this. The Holy Grail.
But no matter how mentally strong you are, sometimes you will go crazy or ballistic or desperate or whatever.
Like every meditator knows, just let that feeling pass.
The only way I know to mentally survive day after day is doing all the physical exercise I can. At home, of course, since I can't leave my mother alone so much time. For me a stationary bike, a pull-up bar, a bench and some dumbbells are enough.
Patience is something you build little by little, like a muscle, not something you were born with.
Patience is will-power, and will-power is patience.
There are no shortcuts. Just hard work. And love, without that nothing makes any sense.
60 isn't old, but it's not young either. Don't you want to experience some life not living with your mother? You deserve some.
Also, it's not always about patience. If there is any history of abuse with parents the adult child should not be their caregiver.
i always find my patience level challenged when I AM tired
you may be just plain tired and need a break
sometimes a week break can reset your patience batteries
I’d look to see what can be done to get you a break
Sometimes even care homes have facilities to look after people in holiday breaks ?
I’d look at your support system around you to get others involved or speak to the care team to assist and say you’re going on holiday
A lot of people don’t even know if they will even like it in the centres
they may find they do and less bored
—
onto that subject your mother may be bored/need something to divert her attention
maybe her grumbles are the only way she can communicate?
maybe there’s something that used to interest her to revive
listening to some music
or audio book which Would read to her ?
other times If the moaning is persistent or severe, it may indicate a medical or psychological issue needing attention so speak to doctor just a thought?
best wishes
I agree she needs more care than currently receiving.
Not knowing the financial specifics, if there is a way for someone else to care for her, I think this is a game changer. Prior to being a primary caregiver, I think many of us have romanticized the notion of "caring for my mom/dad." Once entered into that realm, it's a whole different ballgame. "Hard, difficult, gut-wrenching, frustrating, resentment creating" are only a few of the words to describe the situation. This doesn't mean you're a bad person. This doesn't mean your parent is a bad person. This is just the reality. I didn't want the child-parent relationship that we had during the early years to be eviscerated by the challenges that came along with dementia. Also known as "I don't want it to end like this." My parent was a good parent. These last few years have been so stressful that I am "pissed off" and not as tolerant/understanding as I'd like to be. I've turned the needed caregiving over to someone even though I am still near and technically able to (I'm retired and kids are grown).
No one wants to leave their home. But sometimes it is the best and safest option. And that doesn't mean you don't respect that desire. Her needs rise above it.
Hope this helps at least a little, or at least confirms to you that you're only human and there are others who totally "GET IT."
For me now, it's my 85 year old mother in law. Prior to that, it was my father. I love love love my Daddy. I would remember the sacrifices he made, him taking me to Magic Mountain, going to get ice cream every single Sunday, his hugs and laugh, things like that.
Try and remove yourself from the present.
The best alternative is to find a private caregiver, (easier said than done), to give you some relief, hopefully a couple of days a week. I am in your shoes, with my husband who requires supervision and help with daily activities. Even if you can only afford a day or two a week from an agency, do it, for your own mental health. Elder care in this country leaves much to be desired.
You are not alone feeling the way you do. It is something almost all caregivers face in the early stages of dementia progression.
Coming to Terms
The first step is to accept that someone you love is ill. If you accept that, you’ll find that many of the hardships you’ll encounter have a bitter side and a sweet side. In the early and middle stages of dementia, especially, you’ll run into issues where you don’t know whether to laugh or cry.
Dealing with issues that arise during the early stage of dementia progression requires endless patience and perseverance. Often, the patient insists that they are fine, and may not easily give up control over finances, driving, and other areas of their life. They are usually successful at hiding their symptoms from relatives, who may themselves be in denial about their loved one’s illness.
It’s Not an Act
She had started sleeping in a different bedroom on a different floor. She had taken her clothes out of the closet and had spread them out, saying it was easier that way. She had moved her makeup desk out of her bedroom and into the hallway. She did things that weren’t the results of just forgetting, but seemed more like madness.
The patient may neglect personal hygiene – not wash regularly, skip bathing, and continue to wear soiled clothes and refuse to let you help them change. They may refuse your offer of food, drink, medication, or help with bathroom visits. They may get upset with you, snap at you, or get physical if you insist, or if they believe you are bossing them around.
· Remember that they are not being stubborn or putting on a show. In the face of the overwhelming cognitive effort that it takes to do otherwise, it’s just easier for them to say no. Staying thoughtful and considerate is your best chance of getting the patient to eventually cooperate.
Engage With Compassion
It’s as if we’re dealing with a headstrong child, but one that cannot be taught, one that forgets more each day, one that needs constant monitoring by an experienced and patient grownup. They cannot learn, and yet, as we care for them, all we know how to do is to try to teach… or scold.
Tough love does not work with dementia. You cannot compel the patient to take control of their life or behave the way they used to in the past. This is a time for compassion and understanding, and accepting the reality of their illness.
· Start organizing the patient’s life around consistent schedules and predictable routines. The more you can make life simple for the patient, the better they will be able to navigate the challenges of the day, and the longer they will be able to live independently.
· Treat the patient with kindness and respect. Ask them how you can help, and encourage them to share their feelings. Keep them engaged to prevent them from becoming isolated and withdrawn.
· Help them find other patients who are in the early stages of dementia progression. Introduce them to online forums and support groups that specifically deal with dementia from the patient’s point of view.
No, it does not. So please stop doing readings from your book and plugging them here.
Your mom likely grew up in a time where paid help did what they were hired to do. She sees this person leaving something off the duty list. She is simply observing the chores. She obviously does not see this person as a gift to just enjoy the company.
This is shocking to me. Unless she has 24/7 caregiving.
You are frazzled. And grieving. And exhausted. Give yourself a break.
Read, educate yourself on what happens to a person's brain when inflicted with dementia. The only way you can 'manage' some degree of separation (from emotional / psychological frustration and automatic responses) is by realizing - in your heart and gut - that she cannot help what she is doing.
Do you REALLY expect her to stop complaining and relax and enjoy the company? Why?
You need to understand what is happening in her brain. Then, you move into 'compassion' and learn how to manage / distance yourself from triggers.
You need to realize that you interacting with a person who's (or whose) brain doesn't function as it used to ... yes, she'll constanly complain and she'll keep doing this and more ... she is scared, frustrated, confused.
The way you can help yourself is by:
1. Giving yourself timeouts which is necessary: Knowing / learning you need respites / time away / renewal.
2. Reading / learning what happens to the brain when cells die (do not have expectations of her behavior as you currently do).
3. You develop 'patience' to the best of your ability by:
- removing yourself from the situation - she is triggering you - for various reasons, i.e., you are vulnerable, frustrated, hurt, mad that she has Alz.,
- Setting boundaries w the time you are interacting w/her.
You MUST manage your time / energy. You need to realize, if you do not already, that you need self-compassion, self-love, perhaps LOTS of support from others (find a group(s) and/or therapist).
Learn to take care of yourself.
When you feel triggered in her presence:
1. STOP. Leave to regroup - from a few minutes to the rest of the day.
1A. NEVER EVER EVER ARGUE OR TRY TO CONVINCE HER OF ANYTHING. This is a major emotional upset + total lose-lose.
The goal --- your 'job' is to keep her as calm as possible.
2. Tell her: I understand and change the subject.
3. Google Teepa Snow, watch her webinars, You Tubes.
Contact a local Alz group and get the support you need.
You cannot do this alone.
You are grieving, exhausted, and from what you express, you are unaware of what Alz is (brain chemistry).
Get the support you need. Go to the park, museum, read a good book, take a warm relaxing bath. Know you are grieving and allow the feelings to be there ... underneath your impatience / frustration (which is understandable). We all need to find our own way through this awful condition. And, it is not easy street. It is f---king awful for everyone.
Gena / Touch Matters