Current situation is my family and I (Mom (early 60's), my sister and I (early/mid 20's) are currently living with and helping my grandmother (87) full time. Earlier this year, she had a bad stroke. We were told she probably wouldn't make it past 6 months, so when it was time for her to check of out rehab we wanted her back at her house so she could enjoy her remaining months as comfortably as possible. Well, she made a pretty great recovery and despite some trouble with speech/memory she's in decent health. She needs someone to make her meals for her, shower her, and occasionally she needs help doing other things but everything else she can do on here own. That part is manageable to an extent.
The difficulty comes with the borderline emotional abuse my family and I have to endure on a daily basis. My grandmother has always been like this before her stroke but she had more control over the way she acted around us, now she can't really control it anymore. We can't leave the house even to run quick errands without her making us feel guilty for leaving her behind. If we are gone for 'too long' (30 minutes) she calls my aunt crying about how we left her behind. (This is especially the case when my mom has to leave). When my mom is gone and my sister and I have to care for her, she takes her anger out on us because she's upset my mom is gone. She hates being alone and wants us to sit with her at all hours of the day even though she understands we all have other obligations (like work and school) and we can't be around her 24/7.
She constantly complains to us that she has nothing to do despite all the activities, games, and entertainment we have gotten for her. We have suggested many activities for her to participate in but she refuses to do any of it. We even signed her up for an adult daycare that has many activities and opportunities to socialize with others because we thought it would be good for her to get out of the house and meet other people but the day of, she screamed and cried about how she couldn't believe we were doing this to her, and how we are just trying to get rid of her so we ended up cancelling because she was refusing to go. That was our opportunity to just get a couple of hours of a break, but we couldn't force her to go.
She has always been super pessimistic but after her stroke it's gotten even worse. She complains all of the time, gets mad at us for not doing enough (even though we have all given up our lives to help her), she gets upset if we don't look at her the right way, she thinks we hate her if we spend 10 minutes alone, away from her, we constantly have to walk on egg shells to avoid an outbursts because once she gets upset usually the whole day is done for. It's been almost 8 months of this and we are all at a breaking point. We all have a lot of other things going on in our lives right now that are super stressful already and trying to juggle those things along with this just feels impossible.
I have an exit plan, because honestly I don't want to spend my 20's in an environment that makes me feel absolutely hopeless and depressed all of the time but I won't be able to move out of here until at least end of October - Mid-November. My other family members are feeling the same way, especially my mom. We don't have help from her 2 siblings and when we try to take her anywhere she refuses. She's currently on a waiting list for assisted living facility but she just got put on the list a few days ago and we have no idea how long it will be before they have an opening. We can't take much more, our mental health is at an all time low. Is there anything we could do until a spot opens up for assisted living? I'm desperate for a solution.
I am sorry that you are going through this. It’s hard. She’s most likely scared of being alone. Plus, she seems a bit controlling.
Set as many boundaries that you can. She definitely has specific needs. Clearly, she is not fully independent.
Best wishes to you and your family.
Stroke symptoms show up as damage to movement, speech, swallowing, behaviour, memory, sometimes sight. Symptoms really vary - recovery varies too.
It is a brain injury - this is important to know. Even if movement & speech are as before, there may be lasting damage to the brain. A high percentage of stroke survivors go on to develop Vascula Dementia. The clingy behaviour may be called 'separation anxiety' or 'shadowing'. This behaviour is very stressful for caregivers.
As such, your Grandmother is now a 'stroke survivor'. A vulnerable elder who has lost her independance. Therefore she needs fulltime caregivers.
It was a tremendous gift you & your sister have given - these long months of caregiving.
- You stepped in for crises help
- It has morphed into ongoing
- Ongoing is not sustainable
As women in your 20s you have full adult lives in front of you.
Your Grandmother now needs a caregiving team. A NEW team.
You can choose how much you can do, but be realistic & honest. Discuss this with your Mother/Aunts (whoever has legal responsibility for your Grandmother). THEY need to find a new longterm, affordable, sustainable plan for their Mother.
You & your sister will be studying, off to college, jobs, marriage, partners, children of your own very soon.
Then there’s the fact that a stroke can cause severe mood swings and a whole slew of other “difficult” behaviors, and it sounds as though she’s mastered the use of all of them. She may benefit from a mild dose of calming medication, so ask the medical professional who cares for her.
”Pessimism”? You all KNEW THIS. Were you really surprised when she acted like herself AND even more so, having sustained cognitive loss because of her stroke, and most likely because of her age?
And “emotional abuse”? She can threaten anyone she pleases and say anything she wants, but that really has NOTHING AT ALL to do with providing her with a safe protected environment.
Don’t forget, you chose to bring her home based on some well intentioned but poorly informed ideas that you could make her more comfortable than anyone else, while forgetting that SHE could make the four of YOU more UNCOMFORTABLE than anyone else.
“Her 2 siblings” have nothing to do with her hands on care because they’ve decided that they can’t care for her or don’t want to. You and your mother and sister are entitled to make the same decision.
Harder now, because she’s on the waiting list. So do this. Get over the “emotional abuse”. She has no power over you that you haven’t given to her.
Ignore, ignore IGNORE. Continue to provide for her care needs and ignore her attempts to control your comings and goings. Smile politely, walk away. Stop reacting to her emotional outbursts. They’re caused or exacerbated by her neurological damage. Be compassionate WITHOUT personalizing her outbursts.
You made the choice you made because you are good caring family members, and you have a potential solution ready. Now add balance to all your lives by de-escalating your reactions to her. You, her caregivers, deserve peace and relief.
You have caught me on a day when I can kind of fed up to the ears with people who are willingly throwing themselves on the funeral pyres of elders who are either abusive or simply lifetime addicts to unhappiness. Not everything can be fixed. These people will not change. BUT you still have a chance for a decent life. Make your escape and good luck. Encourage others to do the same.
But absolutely when people get some perspective, they can look back & see how this happens. They were thrown in or stepped in.. they wanted to minimise change, distress & loss for the elder.. the outcome was changes, distress & loss were absorbed into their own lifestyle & life goals.
I see it now with my in-laws, in many little ways. When out, instead of the elder FEELING the need to use a walking cane - in-laws rush to BE a walking cane. It's subtle. But it creeps up. I've asked, do you think you need a cane? No. I have these people. That thinking spreads over every facet of their ADLs... I don't need to make changes - my family can do it. My family can make all the changes so I don't have to change. It's probably not even conscious. Just a reverting to teen, then child, then toddler self-centeredness.
It's up to the adults to place limits.
Anger is often a S/E of depression. My DH is supremely depressed and is already on an AD. I am encouraging him to call his doc and ask if upping his dose might not be in order. His main 'symptom' is anger, followed by too much sleeping.
If SHE won't take them, honey, maybe you all should. I've been on/off AD's for the last 30 years and while I am a little 'flatlined' as to emotions, I'm better on them than off.
Nevertheless--good luck with your escape!
By 2 siblings u mean Moms? I doubt very much if Grandmoms siblings can care for her. This is how it happens most of the time, one child does the Caregiving. Its nice that you help Mom but I never felt granchildren should help if their are other children. You went into this thinking it was temporary and its not. AL may not be where Grandma needs to be. She may need Memory care. She definitely needs to be placed. Maybe look into a nice Long-term place. Yes its more expensive but Mom can apply for Medicaid when Grandma's money is gone as long as the facility takes Medicaid.
I’m sure that you grew up to be respectful, but that needs rethinking when you aren’t getting respect. Options include earplugs, grey rock (look it up), delays in doing things she wants, different things from what she asks for (food?), and of course telling her that she is unreasonable and you have different priorities. Just standing up for yourself might make you feel a bit better. You are not a doormat, and there is no need to act like one.
Your life is important, and you need to get out. However you know that will increase the load on your mother and sister. It’s worth changing the dynamic to avoid that, even if GM doesn’t like it. Food is the quickest way to force issues, and missing a meal is not dangerous to health. For example, if you try again with Adult Day Care and she won’t go, you say ‘they provide lunch there, so we haven’t provided any for you here’. Walk out with ear plugs when the screaming starts. Talk it through with M and S, so they understand and if possible take the same line.
I’m sure that you chose the nicest AL, and of course that would probably have the longest waiting list. It could be worth trying another AL with a shorter list, and aim to shift her when the preferred vacancy comes up.
Best wishes, Margaret
can they put her in a rehab facility fir 30 days on Medicare.?
ask your dr or social services.
Do anyone in your family have POA on her health?
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