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Hello everyone. I just joined this site and wanted to introduce myself. I'm a 34 year old woman looking after four children, a moderately retarded 55 year old uncle, and an 86 year old grandmother with dementia. Life is stressful and overwhelming at times.

The reason I am caring for my uncle and grandma is because there is nobody left in the family to care for them. Initially, my parents moved them to their home so my mom could be the caregiver. Sadly, my mother died 8 months ago at the age of 57 from an aggressive form of ovarian cancer. Her illness was very unexpected and very fast moving. Of course this devastated our entire family and life's felt like one transition after another since then.

My father decided he didn't want to live in the house and so he asked my brother if he'd stay and continue to take on the role as caregiver to my uncle and grandma. He burned out badly so he said he couldn't do it anymore. Now the family had two options- move Uncle and Grandma to a nursing home, or continue to care for them in home with my help. I could not entertain the thought of putting them in a nursing home. My mom never wanted to see them like that, even though her mother was awful to her.

When my mom died I found myself still wanting to make her happy and proud of me, so I agree to move into the house with my family to care for them. The big perk in all this is that the kids now get to live in a house with a backyard. We imagined that we'd move here and the kids would get to connect with their great-grandmother and her past. I thought that my grandma would light up from all the life and sweetness her great-granddaughters bring to the home. The reality has been that grandma still holes herself up in her room and then complains that her life is reduced to being confined to her room all day. We encourage her to join the family in the living area, but she never wants to. She has become a form of entertainment for my children because she is constantly talking about the "bugs, snakes, and little trolls in leather coats eating her medicine" that the children can't see. This living arrangement is like a circus fun house.

I do believe though that the kids will benefit from living with extended family. They are learning to be more patient and to respect elders. Still, there are days where I want to pack their bags and drop them off at a facility and go back to my own family. These feelings get stronger when I'm not feeling well myself but all I hear from them are complaints. They certainly don't care how I'm doing, but I have to remind myself that they aren't well themselves and don't think like normal people. I have to keep my intentions in check and be ok with not getting validation from Grandma (Uncle is pretty good about being appreciative).

If you read this far then you are very patient! I look forward to seeing you all around on the forums.

- Aisha


Welcome, aishamama! It sounds like it has been a rough last few years, but you're handling it like a champion. I love the attitude that you have about your children's feeling. It sounds totally crazy and halfway sane. :)
I thought I should add that nothing mysterious was intended with that last sentence. Our lives can get so crazy, but after a while it seems almost normal.
Thanks, Jessie! I agree that it's important to stay sane is the midst of so much craziness, and humor works very well :)
Aisha, you are a brave soul. Your 55 year old uncle should be on SSI and may qualify for residence in a group home for the developmentally disabled. Your grandma may qualify for a visiting nurse, call them and ask them to do an in home evaluation. As for your children, do not underestimate their ability to pick up on grandma's dementia or uncle's retardation. They will sense your stress and the illness of others. This can cause great trauma and you may see their grades fail, you may see them keep friends away from the house due to embarrassment. You may see them withdraw to their own rooms when things get out of control. You may see tantrums when they are jealous for your attention. Talk to their pediatrician about how this could affect them. I wish you great strength and courage. Visit here often to vent and ask questions. God Bless.
Thanks, pstiegman. I'm trying to make this arrangement work as long as I can. The kids are 12, 8, 6, and 2 years old. They are very aware of Grandma's medical condition and Uncles retardation. I do not leave them in the dark about this stuff. I feel that kids will know something is off and be more stressed if they can't figure out what it is. I've been very forthcoming with them since the time of my mom's illness, and I'm glad I included them in that.

We homeschool so the kids are able to spend time with me every day, and I think that helps. I still take them to do activities they enjoy. I like your suggestion of talking to their pediatrician about how this could affect them. As for them not wanting friends to come over, I feel the same way. I don't want to bring my friends here either!

I just took my uncle a weak ago to a place called Regional Center for an evaluation. They are a state-funded program that provides activities and resources for people with mental retardation. They said they'll contact me in a few weeks if he qualifies and then our hope is to get him out of the house and socializing with peers. I know Grandma and Uncle both get some funding every month. I'm not sure if it's SSI or something else because my dad handles all that stuff. I get their money to use for their care and it's a pathetic amount. It wouldn't cover living expenses in a nursing home for one person.
My sister, who is retarded, lives in a group home and attends a day program. They take her SSI but she has a spending allowance each month. The house she is in has ten residents and she is very happy there.
For Grandma, see if there is an Alzheimer's day program, the Regional Center may know of services in your area. You are so brave. I can't help but wonder if your mother put off her own health concerns to take care of others. You have seen her die before her patients did. 30% of caregivers die before the person they are caring for. Nor could your father or brother tackle this, they bailed out before it killed them. Take care of yourself first, your children second and everyone else third. I'm not telling you to be selfish, but you can't help anyone unless you survive.
Pstiegman- I'm so glad that your sister is happy at the group home. The family has agreed that that is probably the best arrangement for Uncle if Grandma dies before him. We want to keep them together because they are very close. They can't be apart. I can't see my Grandma going to any day programs. She has no interest in seeing people unless it's on the way to the kitchen, and then back to her room she goes.

The statistic about 30% of caregivers dyeing first really scares me. My family really feels that the stress contributed to my mother getting sick, or prevented her from getting help sooner. She became extremely depressed with her mom in the house. My mom and Grandma did not have a good relationship and I think when Grandma came to live here from out of state it opened up a lot of old wounds for my mom. I feel like my mom checked out when her mom came here. It still hurts me a lot and I struggle with feeling anger and resentment at my grandma for making her feel that way. I don't want to become sick from stress and I am looking for ways to minimize it. I'm open to suggestions on how to do that. Currently I have a woman coming over once a week for 5 hours to look after them.
You're a good women taking care of your loved ones..

Now I must ask! This is from someone who's Mom lives with me over 12 years with minimal sibling support:

If your Dad's not living there , does he still own the house?
Who has medical/financial POA for uncle/grandma?
Does your brother help you at all?

This is a long and tiring road you will be traveling with some rewards but you must make sure you are in total control of the situation if you will be doing 24/7 care of 2 adults..

Your kids come first always remember that.

Contact any and all outside resources to lighten your daily load. It will get tougher not easier.

Please come back here often. Many of us have been caregivers for quite a long while. Hopefully we can help you through the daily grind..
Assandache7- Yes, my dad owns the home and is responsible for the medical and financial stuff. He deposits their monthly funds in my banking account every month, with a little extra because they don't get very much. He is paying their medical bills. I feel like I am in charge of the situation because I decide when they need to see a doctor, how the house is run, etc. My dad is there for the funding part so that burden is off of me. That is a huge deal and I honestly don't think I could do this if we weren't being supported financially. My brother is not involved in their care at all. I don't resent him for it. People make their own choices. The family acknowledges that my Grandma and Uncle's care are much better with me as their caregiver. My brother was terrible at it and it was a nightmare for all involved. I still love my brother, but he doesn't have the patience or wisdom for this role.

My brother and grandma have a bad relationship going back to his childhood. She was/is very controlling and I can understand why my mother and brother had such a horrible time dealing with her. I don't let grandma pull any of that crap with me though and I feel like I'm in charge of my household. I'm very firm with my uncle and grandma and I refuse to engage my grandma is arguments. I don't have an emotional attachment to her or need her approval at all, so this becomes easier to not be hurt or bothered by her rejection. I feel sorry for her and when I look at her I see what I don't want to be if I make it to her age.
The other thing I've learned from caring for my mother and caring for my grandmother is that who you really are in life is who you are in illness. When your healthy it's easier to keep up the facade of how you wish people to perceive you, but when you become sick you can't do that anymore.

My mother's heart was truly so sweet and loving, and she remained that way until her last breath. Sure, she had moments of agitation and paranoia but it was easy to see that those were the effects of medication and extreme pain. That's totally understandable.

My grandma on the other hand has had a different attitude her whole life and now negativity is her baseline. She used to be able to act sweet and cordial, now she reminds me of a character in a Roald Dahl story. I can expect as her illness progresses, so will her meanness and nastiness. That's on her though and is no reflection of me. I don't take it personal.

Honestly, her feelings mean nothing to me since my mom died. I'm upset about the way she treated my sweet mom. I make her good food and help her shower, but I don't try to make her emotional pain any better. That's not for me to do, I can't fill her void.

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