I am 25 and I live with/care for my grandma (Alzheimer's). I moved in with her almost two years ago after my grandpa passed away. Grandpa used to make hints that grandma would be nasty to him but we never took him too seriously. Since I have been living with her, I know what grandpa was talking about. At first it was very emotionally strenuous on me and I felt depressed and didn't know how to handle it. She cries A LOT and is depressive, though she goes through phases and she can be very pleasant and sweet. Currently she's on a down swing (that's why I found this forum).
I'm alone on most of the emotional and health care responsibilities. Although my family is great, for them visiting her is, for the most part, just that, visiting or "babysitting" a family member.
Although I do have a few concerns with her physical health, she does well enough in that department so I will only touch on the emotional.
Gram is emotionally needy towards me and sometimes it is exhausting. She will spend the entire day with people and still cry to me in the evening that she is lonely and no one ever comes to see her. I will tell her she had people with her all day and she'll yell that she didn't and that she wants to see me. On evenings when someone is there to feed her dinner I usually come home from work before they leave and go upstairs to workout/study, as soon as they leave she cries up to me that she is all alone and don't I love her and why don't I care about her she is so lonely..... she does this literally as soon as they leave. She demands all of my time. I feel bad because I know in her mind apparently she believes that she is lonely, sad, etc. but I also struggle to understand her condition because I am a big believer in self-talk, the power of the mind, positive thinking, etc. I cannot stand self-pity and negativity.
Not sure if there is a proper way to handle this, but suggestions?? I know God is teaching me patience and I have certainly learned to be less sensitive. I know not to take any directive words too serious, but it seems lately I am becoming cold. I hear so much of it and I have toughened my own heart through it & to bad or hard things in my life. I am not the innocent, joyful person I used to be- maybe this is part of growing up? ha
Lately, I am noticing gram has being manipulative towards me. She seems to want to verbally come at me (attack) as much as possible... She has always been very intuitive to notice when I am trying to be nice & patient but am actually annoyed or tired or busy, she senses the effort and is immediately victimized and has a dramatic outburst. For the most part tho, I keep a calm temper and joke about everything in a dry comedic way but lately even when I am relaxed she starts victimizing herself and spins the basic things I say into something nasty- ex: saying I said that no one likes her (one of her favorite things to say) .. choosing to respond or not, she is quick to put more words in my mouth. Idk why she's doing it and she isn't a rational being so I can't convince her of anything either way. I feel fenced and uncomfortable being around her if she's going to put me in these situations where she only twists and chooses to be greatly offended by anything I say or don't say.
To be clear I do spend a ton of time with her. Outside of work she's almost the only person I see. I give her a lot of time.
I am a Christian and I want to do right by God. In moments where I am annoyed or wanting my own freedom I know someday I will look back and miss these days & I know it wouldn't hurt for me to learn to be more selfless.
I hope this all make sense. I don't have a specific question just looking for general advice and maybe to vent a bit. I don't have people to talk to who truly understand, as I mentioned before the rest of my family doesn't live with her, so I thought I'd give this a try.
Advice for helping keep gram happy?
Advice for dealing with emotionally needy?
Any advice for me in this?
This cannot be easy for you in any way. God Bless you for the temporary sacrifices you are making right now to give your Grandma the love and support she needs!
In the earlier stages, my Dad was ok to be on his own, but now that he is in late stage dementia, if he is left alone in a room, he will go looking for you every time. I have my mom and my husband here though so it is possible for me to get away by myself. I commend you for doing this on your own.
When you have friends and family come to visit, I think you should utilize that time and step away from your Grandma to have some ME time. Explain to them in private that you aren’t being unsociable, you just need a break. Hopefully they will understand. And ask whoever is there cooking her dinner to let you know when they are leaving so you can come down before they leave so hopefully your Grandma doesn’t get upset. A 2way radio or intercom works great for those types of situations.
Depression is a part of this disease unfortunately and my Dad’s doctor finally prescribed depression meds... they have really helped with his outbursts and agitation.
Something I’ve learned not to do with someone who has dementia (I believe that alzheimer’s and dementia are very similar) is to raise your voice... always speak calmly with a smile on your face... it goes a long way. It is also very important to reassure them. Sit face to face and place your hand on her leg and tell her that you will always be right here to keep her safe, etc.
When I leave the room sometimes I will hear Dad say, “she doesn’t like me anymore” That’s when I will go in and sit on the stool in front of his chair, touch his leg and say, “I love you Dad” and give him a hug.
Never try to reason with her... or correct anything she says. Her current reality is all she has to hold onto. She may not remember that there were people there all day. Even if you don’t agree with what she is saying, go along with it, but redirect her attention to something else. For example, say, “Let’s find some music to listen to Grandma”. We listen to music all day here (Alan Jackson.. oldies like Patsy Cline.. gospel music) all day until about 6pm, then we watch the hallmark channel or Maine Cabin Masters. Most of the day, Dad just sits in his chair in the living room silently watching the birds out the window and mom and I sit in there too.. playing games on our devices lol. I spent an enormous amount of time trying to find things that Dad could do to keep him from getting bored, but finally learned that it’s normal for him to sit quietly and stare off into space.
One more piece of advice (sorry this is so long)... if you haven’t already, start writing in a journal. Get all of the feelings you are feeling down on paper... it helps tremendously!
Oh, and, another ritual that we have is that once a day I read a chapter from the Bible to Dad. He loves it and it helps us all get through another day :)
You're too young to be taking all this on and giving up your future.
Your mention of "I want to do right by God" concerns me. As a Christian myself, I get where you're coming from. BUT... this mentality is dangerous. I cannot tell you how many people I know who stayed in abusive situations, let themselves be hurt over and over, be miserable, cry themselves to sleep... because surely God was teaching them a lesson by suffering so much, right? I'm a terrible sinner who deserve this, right? God must be teaching me a lesson to have me be miserable!
Nope. God does not want you or anyone to suffer. God wants you to be happy and live life to the fullest. Did Jesus not say He wanted us to have life more abundantly? Going through suffering voluntarily is being a martyr.
I can assure you, you will not look back on this time with grandma and miss it. I think even YOU know that, deep down. You're trying to talk yourself into accepting this and being okay with it. You aren't. And that's okay. It doesn't make you a bad person at all.
What you WILL miss is the squandering of your 20s. I'm 48 now and I realized I wasted a lot of time in my 20s, and it's a bummer knowing you won't get that part of your life back.
You can't keep grandma happy. She is determined not to be. She will drag you down with her. Misery indeed loves company. It's great that you are concerned for her, but you can't do all of this. People assume caregiving is a job you can "love your way" through. It isn't. All the love in the world won't sustain you or her.
Where are her children? Why did this fall on you? Because you're young and others think you have all the energy and time in the world?
Grandma is no longer independent & cannot live safely alone anymore, right?
Q1 Why did you move in? What I mean is, why did YOU move IN, not Grandma moved to where she could be cared for? (Was there family pressure? Or your feelings of duty? Or purely an honest wish to help?)
Q2 When moving in, did you think you could meet all Grandma's current needs by yourself?
Q3 Now that you have lived there 2 years, are getting to understand Alz more, do you still think you can do this alone?
Q4 How will you know when it is time to bring in a wider group of carers?
IMHO it is not just about Christian beliefs, morals, values, or even any ideas of being 'the good' granddaughter.
To me it is about plain old common sense - which tells me that a progressive disease has progressive & increasing needs, physical & mental, which will need a bigger support team.
So my last question is;
Q5 What does "do right by God" actually means to you?
A person can be a Christian and not carry the burden of doing the hands on caregiving.
Why did you decide to move in with your grandmother?
My advice is to put in your notice to your great family members who come by to visit or babysit, and let them know 2 years is your caregiving limit. Alzheimer's gets progressively worse as the years go by so grandma's mean and manipulative streak is just the tip of the iceberg now. It's someone else's turn to feel the joylessness and depression that's associated with caregiving of this caliber, and you can become the visitor and occasional babysitter, as it should be with a 25 year old girl.
It's your turn to live life fully now and regain your joie de vivre. You're allowed to do that with no guilt. God would approve. You've done enough. This has nothing to do with love. You love grandma and you've spent your life proving it. Now it's time to love YOU and go live your best life.
You deserve to.
If grandma is lonely, it seems logical to me that she would thrive in a care home with lots of people around, as opposed to be stuck at home.
The patience the Lord is teaching you may eventually run out. AD disease will test your ability to care for her. She already demands most of your time and is often combative. Begin looking for outside help such as home care, adult day care and even LTC facilities. Your local Area Agency on Aging can help, call them.
Her fear and her sense of abandonment are likely to increase in the short to medium term. If it's already driving you up the wall, the current living situation is not sustainable.
What are the options? Were alternatives investigated before you were appointed primary caregiver?
For us it was a Godsend! Mom’s hospice nurses and caregivers are angels!
They love and care for her. They are very compassionate with our entire family.
This person is asking for helpful suggestions from people who truly understand, people who have been there and can empathize, not criticize. What were you doing at 25? Reassurance, HELPFUL advice, and the promise of hope is what I expect of this forum.
I think you are being very hard on yourself. It's natural to feel resentment and anger when someone you are caring for is making you feel like you are selfish and are not doing enough. I don't read other answers before I post so I'm sure this has been brought up already. How is it that you are taking care of your grandmother? Where are her children? Have you checked into other resources?
I think you need to find someone or some kind of outside medical resources that can take over much of the responsibility for you. People can be selfish. Those who step in to "babysit" and then happily leave you to take on the bulk of the responsibility will continue to do so if you let them.
As for God and how he feels about you. I'm sure you are perfect in his eyes. Don't stress that. The very fact that your conscious is telling you things tells me that your heart is most likely in the place where it needs to be.
I am a caregiver to my dad. I come to these forums to try to find encouragement and advice in my everyday struggles. It really is not helpful for people to come on here and tell me that what I am doing is wrong. Because what I am doing is right. Giving back my wonderful parents the love and support that they have shown me my entire life. It is NOT helpful for people to tell me to walk away. I doubt that danim5 is even a part of this forum anymore. She didn’t come here to ask how she could get out of her situation... she wanted advice on how to handle it.
it is NOT ALWAYS an option to place your loved one in a facility. Either there needs to be a long term care insurance policy in place, you have to rich, or you have to sell everything you worked for your entire life to get on Medicaid. Not everyone has these options.
Your home and one vehicle are exempt assets. Personal belongings don't count unless they are very valuable-- not furniture, jewelry or precious possessions.