It feels so horrible to admit this, but I need an outlet for these feelings because I can’t talk to my family about it.
I am 26 and I live at home with my mother father, older brother and grandmother. Pre covid 19 I was completing my MA in political science and working from home.
My my grandmother has dementia. She has had symptoms for around 6 years but it worsened when her partner died in 2016 and she was diagnosed around 4 years ago.
I adore my grandmother. We have always had a very close and positive relationship, which is why it pains me to admit that I am beginning to resent her terribly.
While she is physically fit, e.g. she loves to dance and cleans her space daily, she is incapable of day to activities such as making her own meals, feeding her cat, bathing on her and she needs frequent supervision. She also has anxiety so she asks questions constantly (e.g. where is my cat; what day of the week is it etc; has my cat eaten) and she will ask the same question over and over again in the period of a couple of hours.
She also has terrible mood swings. She can be happy go lucky one moment and depressed the next. She also has ‘tantrums’ when she doesn’t like something or is told she can’t do/have something (e.g. she forgets she has eaten and could happily eat two loaves of bread and a two packages of lunch meat in 2 hours. When we tell her she had already eaten she become very irate. We are not unreasonable, we feed her substantial snacks between her meals). She can also be really rude and difficult.
I am totally aware that none of this is her fault and is a result of her disease. However, I am having a really hard time coping with it and I feel like it’s causing me to miss out on my 20’s.
My mom also cares for my Gran and my dad and brother help a bit. But my brother and I seem the only ones home during the day and it usually falls to me to feed her/ feed the animals/ answe questions/deal with anxieties/bathe her.
I still live at home and while I do contribute, I am aware that I am lucky to have such accommodating parents and I am so grateful and happy to help out. However, the first thought when I wake up is feeding my grandmother. My free time from work is often spent caring for her, and my work and writing is constantly interrupted by her questions and anxieties. I feel like I am emotionally drained from dealing with the trials of this horrible disease.
I am not an unreasonable person, I know that adulthood comes with responsibilities and I am not trying to shirk them, but your twenties are supposed to be a bit more carefree before kids and caring for your own parents when they are elderly. I am missing out on the carefree (and have done for the past 3 years) and I feel like I might not want kids because I am so drained from this experience already. I don’t know how to address this resentment but I feel like it’s having a massive impact on my life. I can’t speak to my family about it because I don’t want to make them feel bad and none of my friends can relate in the slightest to my experience and feelings.
I just needed somewhere to vent. Sorry about the long post.
Grandma needs to be seen and evaluated by a geriatric psychiatrist for her agitation and anxiety. She doesn't deserve to be living in constant state of agitation.
Watch Teepa Snow videos about how to manage folks with dementia. Encourage everyone in your family to watch as well.
Is there a schedule of who care for grandma when? For this to work, you all eed to have some freedom some responsibility, as well as an agreement on how to manage grandma.
She sees her physician regularly and is on medication for depression and anxiety. They have limited success and she has good days and bad. Unfortunately she has suffered with anxiety most of her life and it has only worsened with the onset of the disease.
We have tried schedules but unfortunately there never appears to be enough cooperation and it always goes back to it being mainly my mom and I and just me when she is not home. It’s got to the point where we have family meetings/fights about it and there are always promises that it will change but it never does. My dad and brother will help every now and then, and then claim they participate, but they are not involved in the day to day care.
Thanks for the video suggestion.
Is there adult day care in your area that grandma can attend, post Covid? It sounds like she needs some other outlets in her life.
Going forward, is it sustainable for you to attempt to earn a Master's degree while acting as an unpaid care giver?
If you proposed to be paid, your family would counter with "but free rent" right?
Figure out what your room and board is worth locally. Then compute hours of caregiving at the local rate (find an agency and ask what their rates are).
You might be shocked at how much money you are saving your grandparent's children.
Consider if this is fair
It's the day after day thing that can really get to you. Caregiving a person who has dementia can be especially exhausting and frustrating. The behavior you describe is similar to what I saw with my LO at one stage. She was obsessed with her cat and its welfare, repeatedly asking about the cat, crying and worrying that the cat would escape the house through a crevice the size of a pea. Begging for more and more cat food, though there were dozens of cans of food. The obsession over the cat was not healthy. Two things that really helped was taking the cat out of the situation (her obsession with the cat made it very nervous and anxious. It was not happy being around her she was so obsessive with it.) AND a daily medication for anxiety and depression. She soon forgot about the cat and became content during the day, without being drowsy. A daily state of agitation is not healthy for her or you I'd encourage whoever is in charge of her medical care to get her evaluated for medication to treat this mental distress.
I'd also try to figure out your future plans. If you have plans, you can decide what will make you happy long term. Your short term situation might be okay now, but, I'd consider putting yourself first at some point. Having that plan, information, resources available, might help you feel more in control. Having control, makes me feel better, as I know I am still in charge of what I do. Also, I'd suggest:
Discuss the daytime schedule and explain that you need a certain number of hours that are uninterrupted to get you work done and find a private place for that.
Find a good online support group to share and vent.
Find a good app and listen to calming soothing sounds. I'm currently listening to Spirit Spa. Your grandmother might like that too. And, I've also gotten the Rain soundscapes for sleeping at night. It really helps with calming and relaxing before and during sleep.
Make plans to move out, that's your best bet. When a situation becomes intolerable and you can't fix it (ie: placing grandma in a Memory Care Assisted Living home), then you fix YOURSELF. That's all you can really do.
In the meantime, get her an Alzheimer's clock:
https://www.amazon.com/s?k=alzheimers+clock&ref=nb_sb_noss_2
This clock has been quite helpful for my mother who lives in Memory Care; it gives a readout in LARGE print of the day of the week, the time and the date, ie: today is Monday May 18, 2020 at 12:56 in the afternoon. It takes the guesswork out of the equation for people with dementia who are chronically trying to figure out what day it is. It's not going to ELIMINATE the questions, mind you........but you can always say Grandma, look at your clock.
I sympathize with what you're saying 100%. I've been dealing with my mother and her dementia since she was diagnosed in 2016 (but she was acting confused long before her official diagnosis). This is an ugly path that only gets worse as times goes on. There are glimpses of lucidity mixed in with the incoherence from time to time.......in fact, my mother (who's 93) has been quite lucid for the past 8 days after being incoherent and utterly miserable for nearly 2 months prior) so you never know what to expect. I would have lost my mind by now if I was responsible for her care in my home. Dementia does reach a point where it becomes impossible to do so.
Best of luck!