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She has dementia. I moved in with my grandparents to help with my grandfather who had Alzheimer's disease. When he passed away, I moved my grandmother in with me. I have no siblings, children, parents, significant other or friends. I took a leave of absence from work. I'm drowning in debt, depression, and guilt. I have a lot of patience. Teaching middle school for 22yrs. helps. Yet, I still get so angry, internally, with my grandmother. She is argumentative, stubborn, mean, etc. It's not the grandmother I grew up with but the disease. I know this so why can't I stop the anger and frustration. It breaks my heart watching her try to remember things or do things. She was a strong, independent woman especially for her time. I love her so much. I am blessed to still have her in my life at 91 years old. She has a "son" who does nothing to help. He is critical and cruel. Yet she takes it from him and checks her phone numerous times a day to see when he last called. Waiting for him to call again. HELP!

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Praying for you. I know the pain. My mother is a dementia patient. She eats ROUND THE CLOCK. I am an only child, no family or nearby friends. Please suggest ANYTHING, it's way too much to deal with.
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Jules7 Oct 2021
I can't get my gma to eat. She does, but it's a battle. Are you asking for suggestions from me? I've been doing this a long time, so I have many. I just got real frustrated today. I found this Forum and just vented. First time I've ever done anything like this before today. Gma doctor suggested it a long time ago but... I'm here if you need anything. Prayers.
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Are you concerned that if you transition her into a facility that you will lose your place to live? This is a common dilemma. Please understand that she may be better off in a facility with other people. She waits for her son to call because there aren't enough distractions, like activities, events, visitors, like there may be in a care community. If she can't afford it, you can apply for Medicaid for her. Her behaviors and health will only decline and her care needs intensify. What's your plan for that? There are options, but you need to come to peace with one. It will be harder and then eventually better for you. Blessings to you for caring about her so much.
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Jules7 Oct 2021
I own my home. My gma lives with me. She has been going to a Senior Center for a while now 8am to 2pm 3x weekly. Gma doesn't remember what she has done or who she is befriending but she is enjoying the Center. We have a schedule at home that Gma and I follow that her doctor suggested. Brain games, family photo games, etc, I will not put her in a Home ever. I will hire round the clock nursing care if needed. Her father was in a nursing home. I remember the smell of urine and his rapid decline. Gma is my number one priority. Thank you for the blessings. They are always good to hear.
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Please get others to help you in caring for your grandmother. It is very easy to experience burnout caring for somebody who will only experience continuing decline in health and ability. Ask family, friends, neighbors... and consider sitters and home health aides.

In the meantime, she will do best with a consistent routine. She will come to rely on it to know "what" will happen next when the world may seem confusing to her.

It may help to review Dr. Kubler-Ross's stages of loss.
Stage 1 - Denial - a feeling that the change is temporary or unreal.
Stage 2 - Anger - a feeling of "being cheated" or that this is unfair.
Stage 3 - Bargaining - ineffective actions to try to bring things back to the way things were before.
Stage 4 - Depression - feelings of sadness and regret
Stage 5 - finding peace in the current situation
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Along side the feelings of grief and loss with your grandmother's slow passing, there is also a fear of your future.
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Jules7,

Let me start off by saying you're a wonderful person and your grandmother is lucky to have you. Never say never though. Sometimes there's no choice but to put a person in a care facility.
You say that she has a son who is critical and cruel to her, yet she's able to keep her behavior in check with him. So she isn't as far gone with dementia as maybe you think.
I've been a caregiver to more elders with dementia then I can count. One thing that I learned over the years, is that many elders with dementia will abuse their caregivers, but are able to keep it in check around other people. This is when boundaries must be established and reinforced with the elder. No one has to tolerate abuse.
When she is being stubborn, argumentative, and mean you get up close, look her straight in the eye and tell her loudly and firmly that she will not treat you in such a way. They walk away and completely ignore her. You must set boundaries and learn to ignore with love if you're planning on keeping her with you at home.
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Jules7 Oct 2021
I think it is because she is on the phone with him. He lives up north. She gets off the phone crying but unable to repeat any of what he has said. I started listening to their calls after the second time this happened. Not everytime but when I hear her getting upset, He says things like, you are faking it or you are crazy. She just says either okay or yes. I do not think she is comprehending what he is saying but knows it was hurtful. With me, she forgets within minutes of being mean. She still seems upset but when I ask her what is wrong she will tell me she is fine. Meanwhile, I'm still wiping tears from my eyes. The doctor suggested a puppy. I love the little guy but wish I didn't listen to the doctors advice. Gma asks me several times a day what she should be doing. I made a schedule from 8am to 10pm with different activities. I have notes all over the house to help her remember things. It just never feels like I'm doing enough.
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Sounds like you're suffering from FOG (Fear, Obligation, Guilt).

If you're "drowning in debt" she needs an alternate living situation ASAP or you'll destroy your own future and be completely screwed when she passes.

Put her in a Nursing Home or Memory Care.
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whatdidigetinto Nov 2021
Also F for Frustration. One thing I have learned, finally, after way too long, is that when I get angry, I'm usually actually frustrated. Frustrated that I can't make them well, frustrated that everyone places everything on me and I keep taking it.
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You’re angry cuz you’re tired and fearful of the future. My heart goes out to you-it’s hard to take on so much responsibility knowing there will be more decline.
It sounds like you’re doing a great job but are on overload. I think you should create a dialogue with her son informing him how she’s really doing, how you need more help with her, and how much she misses him. He needs to know. Perhaps he can help financially (as he should) with contributing towards more local help. If funds aren’t available from Gram or her son, apply to Medicaid for in home care. You need a break.
Please stay on this site as a source of information and support. God bless you!
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So sorry…I get the pain. When I found myself frustrated and angry I sought mental counseling..THE most valuable thing I learned was I am NOT responsible to keep my mom happy..I am responsible to keep her fed, a roof over head and her safety..Now when she is grumpy, depressed over her lot in life {Lewy Body Dementia}..I hear my counselors words! It made all the difference in the world to learn…..moms happiness is not my job. Quite honestly mom was never happy, always depressed and a complainer. So at 88 she remains a unhappy gal. I do what is within reason…My brother does a couple of hours a week visiting..he feels ok with that. Maybe gramma needs an assisted living situation where you can visit and have enough energy left to work and relax.
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So much going on here, I think it would be worth connecting with a Alzheimer's Group or Councilor trained in this subject to help you work through all these emotions which are very natural ones. Dealing with this is no easy walk and involves many frustrations and sadness. There is care plus loss here and you need some help. Don't try to do it with no support. Very tough. As far as her son is concerned best he stay out of the picture as no help. Sounds like he is in denial big time.
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God bless you, Jules7 for caring for your grandmother with such love and sacrifice. You will read a lot on this forum about how important it is to take care of yourself. It's not easy to do that when so much of your time, energy, and emotion is focused on caregiving. Others have suggested looking for a long term care facility for your grandmother. If that bothers you, think of it as an act of self-care. It's not just to help your grandmother (which it would likely do), it's a way to help yourself, and that is by no means selfish. How can you continue to help your grandmother if you burnout? And when you do completely burnout, you may not have the emotional and mental strength to make good decisions for your grandmother and yourself.

You mentioned that your grandmother goes to a senior center a couple of times a week. Most senior centers have staff on hand to discuss exactly what you're dealing with. They may even be able to help you find a good facility and talk to you about managing finances (many help fill out Medicaid applications with you).

What ever you do, please know that you are not alone in your feelings of anger. Many of us caregivers cope with these difficult emotions. My counselor tells me to "put your anger and worry to work." In other words, use those emotions to help move you to actions that are productive. Please know that many here understand and support you.
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You can try to get the son to visit or or least call every day.

You can also let the son know that you need one day a week off and the whole weekend off Every month so you do not get Burn Out.
Either he can take care of mom himself during those times or he can hire someone to do the shifts.
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So good of you to take care of your grandmother. Not all grandchildren would And, bless you for not putting her in a home, as a retired nurse that worked in several over the years, none are good. Not one gives the care the elderly needs. Home health care is an option, just need a Dr to order this service. Thank you for taking care of her, so many just stick loved ones in these homes and forget them. You are a very caring person.
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Geaton777 Nov 2021
She doesn't have any control over the son. She can make suggestions that would make it "easier" for him to be more involved, but then she has to have 0 expectations and no anger if he declines.
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For me anger is part of grieving and for a lot of us grieving starts early - when the person you knew has gone and what is left behind is upsetting. Most of my grieving was done way before my parents' deaths.
You sound as though you need to share the burden of caring a bit more and make sure you get time to yourself.
You are doing your best. Try not to take offense at what she may say or do. It is the illness talking!
Good luck!
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Jules7,

The first thing I'd like to say is to take it easy on yourself. Caregiving takes such a toll on us emotionally, physically, and spiritually. Your story rings so true for me. I have had my 96 year old mother living with me for the last year and a half. She does not have dementia but she can be very difficult to deal with. She too was once very independent so we often butt heads.

All that you are feeling is so normal. No doubt you love your Grandmother and are doing everything you can to care for her and keep her safe and comfortable. We caregivers give so much of ourselves that we are often left with resentment, anger, frustration and then guilt because we feel these things. We tend to put others before ourselves and at the same time expect so much from ourselves. We need care too.

I waited for my sister to step in and give more of her time. I finally realized she wasn't going to do as much as I wanted her to. Try spending what energy you have finding some outside help. Walking this journey alone is too difficult. I think you will feel so much better when you get skilled help to take some of the burden off.

God Bless you. You are no alone.
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Anger is just another word for another emotion. I believe that yours may be frustration, loss, and betrayal from her son. I take care of my mother, whom has become someone different. It is hard to see the person you love turn into a stranger. It breaks my heart because I see her sitting there, and yet I am already mourning the mother that I have lost. I have learned a lot by watching Teepa Snow's videos on YouTube. She has given me tools to use to communicate, and to understand what the person you are taking care of is also going through. Breath! You are doing a remarkable job, and you are a wonderful granddaughter! Check out her videos. I have found them comforting and educational. Remember that you are not alone, and we are here for you. God bless.
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I hate to say this but I will. You love your grandmother (what she once was but now now - who could with dementia and acting like this). She is NOT what she was and her behaviors are tormenting you and making your life miserable and having a terrible effect on you. Either get a caretaker to relieve you of what you do or place her. You don't keep people if they do harm to you - you must place them.
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I think her being argumentative, stubborn and mean might have something to do with it . And , I think you being human has something to do with it, too . No one understands what we are going through except those of us who are . Our loved , very much loved ones are no longer with us. The disease has changed them ..They live in a totally different reality . They have lost so much of who they were and we have lost them . We were not prepared for this and they were not either . Attending a CareTakers meeting has helped me immensely. My group is on line , twice a month . First thing I heard that really helped me was, their “brain is broken” . If I keep that foremost in mind , it helps .. Another thing I learned was that I would need help and would also have to take care of my self . In my situation it is a 24/7. We are retired. I do the best I can with what I have to work with . We do have a helper come in 3 hours a week . They walk and talk and it gives me some time that I don’t have to think about him . I also work his doctors appointments around the things I need to do to keep my sanity . I breakfast with the girls once a week . I attend my quilt meeting weekly and places I used to go ( dominoes) I now have them come to my house. He is in good enough shape that I can leave him to food shop and do errands . As for her son, there is nothing you can do . I suggest you call your local council on aging and talk to them . They will be able to head you in the right direction to find you information on meetings , in home care and legal issues. Remember , Her Brain is Broken and take care of your self .. She can’t help it !
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MJ1929,

Could you list the nursing homes you visited that don't stink like urine and crap and are not depressing?
I've been in many nursing homes and have yet to find the one you're talking about. Where is it?
I'm sure there must be establishments like the ones you speak of but unfortunately most people aren't millionaires who can afford such lovely places.
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lealonnie1 Nov 2021
I had my mother in Hallmark Nursing Center in Denver Colorado for rehab for 3 weeks in July of 2019 and it was a lovely place; no urine odor at all, no odors in fact, bright & airy, lots of activities, a nice dining room and a big arts & crafts room, a small ice cream parlor open daily from 1-4 pm, gardens, sitting areas outside, etc. The staff was attentive & well trained, too.

https://lcca.com/locations/co/hallmark/


When she runs out of $$ to private pay in the Memory Care ALF she's living in now, I'm going to place her there and apply for Medicaid. Not 'all' SNFs are horrible places, that's a fact.
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It's almost impossible not to react to combative behavior with anger and frustration. Don't think you are a terrible person. Look for a caregiver support group where people share stories and strategies. This forum is a big help, bit you might also find a comforting local group in your area. Call the Alzheimer's Association for some ideas and guidance. You can access them online, but it's nice to talk to a live human being when you can. They do a lot of research and offer great support in dealing with difficult dementia behaviors of all kinds.
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Jules7: Imho, perhaps your grandmother should be in facility living. As for your "drowning in debt," which is an entirely separate issue, perhaps you should see a financial planner.
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It sounds like she is a narcissist who only got worse when she got dementia. Your situation is a really anger producing one. I think you should put her in a facility that you can afford. I think I would get full time help and then try to either sell off some valuable stuff, or try to borrow some money only if you're in dire need of it, and get another job that is aligned with your skills even if it's a menial one.
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Who has medical POA? (If anyone)

If it is you I I would start to apply for your state’s Medicade.

It is a (at least in my instance) long difficult process. Then once you see what she is eligible for you can see about placement options. You will not be able to continue at this pace. Eventually it is TO MUCH WORK for one person. That is physically, mentally and financially.

In addition if she qualifies for Medicade she would probably qualify for In Home Supportive Services and you could get paid for some of the stuff you do for her. This would require an additional application for you both. It takes a little sting out of carrying the load if you get a bit of compensation and it helps you both.

Good luck.
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lealonnie1,

You say the rehab your mother was in for three weeks was very nice and clean with no urine or crap smell. I believe that.
Rehab areas (also known as sub-acute) that are short-term stay are often very nice. The one my father was in for rehab was decent too.
What does the long-term part of the facility look like? My aunt is currently in the 'memory care' floor of the same facility my father did his rehab at and it's absolutely disgusting. When my father was downgraded from rehab (insurance stopped paying) to room and board Custodial Care, it was absolutely disgusting. We moved him to another facility for room and board care that was better but not by much.
If all the areas of the facility your mom was in are as nice as you say, then it's a good place. They are rare though.
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Prior to this wonderful message site. I too could not understand my feelings when all I read was play soft music. Rub her favorite lotion. Show her pictures. On and on of a very romanticized version of caring for someone with Dimensia. Give yourself a break, remember you are human and you have aright to feel whatever you are feeling at any given moment. Take care of her as long as you can, but when you can’t do it anymore than let her go to a facility. I have had my Mom for 13 years. First 8 I drove to her home several times a week, than the last five she has been in my home. I keep a picture of her when she was young because it helps me remember who she use to be. Dimensia takes most of the sweetness out of her. Many with Dimensia feel lost, confused, scared and angry and unfortunately take it out on their care giver. My Mom often thinks I am her servant and not a very good one because she threatened to fire me lol. Those are the moments I can regain my patience because I know her awful behavior isn’t really her. If it helps get angry at the disease but trying to reason with someone with Dimensia is usually an exercise in frustration. Know your doing your best and hopefully that will console you.
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