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“How Can I Care for My Aging Grandmother with Dementia?”

I’m writing to you regarding my relationship with my grandmother. You and your readers have been so helpful in helping others with their family issues that I thought I could reach out here. For the last five years I have been taking care of my grandparents’ finances (paying bills, doing taxes, etc.) and helping them with tasks around the house. I go to their house one evening a week after work to take care of whatever they need done. My grandfather passed away about six months ago. At the time, my grandmother refused to acknowledge any feelings regarding his death. I suggested grief counseling on more than one occasion (having formerly been one in need, I knew how beneficial it could be to her), only to have the suggestion brushed off. Recently, her neighbor suggested she seek some sort of counseling, and she immediately agreed and then went. Once.

My grandmother called out of the blue last night, accusing me of breaking into her home during the night — not to steal, but to move things around, in an attempt to make her think she is going crazy! She accused me of rifling through her belongings, snooping on her, and telling the neighbors about the belongings and goings-on in her house. She said that she knows what I’m doing, and she doesn’t want me to do anything for her anymore. She packed up all of my childhood mementos and put them in her garage, told me to come get them, and then told me that, if she sees me in her house again, she will shoot me! Wendy, I live in a different state – to suggest that I would drive in the middle of the night to her house is unbelievable! I have been dutifully helping my grandparents for years, paying their bills, doing their taxes, taking care of all the financial issues and paperwork when my grandfather passed away, with exactly no inconsistencies or irregularities. It’s been relatively thankless work, but I do it out of concern for their well-being.

My sister said that my grandmother recently accused her of the same, and, as a result, they are no longer speaking to one another. I had been tasked with helping both her and my grandfather because her relationship with her children is tenuous at best, a result of the same types of accusations over the years. (I feel that I should note that she accused my grandfather of the same things when he was alive, despite no evidence of such behavior and despite his being wheelchair-bound and physically incapable of moving many of the things she accused him of moving).

I am genuinely concerned for my grandmother. Not only can she not handle her finances (she scratches out the numbers on her checks because she doesn’t want the people she’s sending her checks to to have access to her account numbers), but she has also become increasingly paranoid to the point of pushing the entire family away. (Her doctor had her on anti-anxiety medication, but she decided to quit cold-turkey without informing him, and I believe this is a part of the problem). She has always been somewhat paranoid, but it is now to the point of completely consuming her interactions with everyone.

I am at a loss for what to do. Can I call her doctor and notify him of this change in her behavior? And if so, to what end? She can’t be forced to see him, or to take medications, but I am afraid for her and what will happen to her if she pushes everyone away. What if she has a medical emergency? Who will know if they aren’t allowed near her home and she won’t speak to them? I want to call her and try to speak with her rationally, but that is impossible if she is having a bad day (as far as the paranoia goes), and if she truly believes that everyone is out to get her, I mean, realistically, there is no rational conversation to be had with a paranoid person. Please help, I don’t know what to do. — Worried Granddaughter

You are a loving and compassionate granddaughter and you have gone above and beyond over the last few years to care for your grandparents, but the time has come for you to ask for help. This is not your job alone. Your grandmother actually has adult children who should be pitching in! Is your parent — the one who is her child — still living? If so, approach him or her about supporting you. Round up your parent’s sibling(s) as well as your sister and any other adult relatives in the area and have a family meeting to discuss what to do about your grandmother.

I found this helpful column about dealing with aging parents with dementia that you should check out. Pay particular attention to the part about a Power of Attorney. Who is your grandmother’s POA? Honestly, that’s the person who should really be taking on the bulk of caring for your grandmother’s finances. What about guardianship of your grandmother? Is there a guardian? There should be. Here’s how to obtain guardianship and also here (again, this shouldn’t necessarily be your job just because you’ve taken on a regular care-giving role; one of your grandmother’s kids really should take on the responsibility!).

Also note the part in the column about getting cooperation from an aging family member’s doctor. Absolutely, you should be contacting your grandmother’s doctor and discussing her behavior with him or her:

I encourage adult children to jointly write a letter to the doctor explaining your concerns. E.g., ‘we’re all worried about Dad because he is verbally abusive, has made many mistakes with money lately and his behavior is erratic.’ Give an example or several. Have all involved sign the letter. The doctor is now on notice of the problem and may request an appropriate evaluation. The doctor may be more persuasive than family in getting your elderly parent to accept help.

The main point I want to make to you is to stop taking all of this on yourself. Caring for an aging family member with dementia and paranoia is emotionally and physically taxing, and there’s no reason you need to take on 100% of the burden. If there are other family members, enlist their help. I don’t care if they don’t have a good relationship with your grandmother. This is as much, if not more, about supporting you as it is about supporting her. And beyond family members, you should be enlisting the help of professionals who specialize in supporting relatives of aging/ill/senile people. Talk to your grandmother’s doctor and tell him exactly what is going on in as much detail as you can (including the important detail about her refusing her medication!). Contact a social worker. Get in touch with a lawyer about obtaining a POA and/or guardianship. You are not an island here. Round up your people and make a network of support. Your grandmother needs it, but, more importantly, you need it.

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If you have a relationship/dating question I can help answer, you can send me your letters at wendy@dearwendy.com.

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{ 20 comments… add one }

avatar lets_be_honest May 6, 2014, 9:14 am

Please take Wendy’s advice and talk to her doctor. It appears that she has dementia and its getting worse. I, too, care for a grandparent who needs 24 hour care and suffers from dementia. Its not easy, and often thankless, so I applaud all you are doing as a grandchild.

avatar lets_be_honest May 6, 2014, 9:14 am

Oh, when you look into obtaining a power of attorney and/or guardianship, also look into a Living Will/Health Care Proxy.

avatar lets_be_honest May 6, 2014, 10:48 am

Heh, ironically I just got a panicked call about my grandfather needing more help this week.

avatar MissyC May 6, 2014, 9:26 am

I can try to offer some insight, as my grandmother with dementia passed away just a few weeks ago and the behavior you are describing, LW, sounds very familiar. My mom is an only child, and so along with my brother and I, we tried to care for her to the best of our ability, although my mom lives in a different state and I have also been living either on the other side of the US or in Europe for the past 7 years.

For the last 3 years, my grandmother was living in an assisted care facility and doing quite well. Before she moved in, she would get into her car and drive aimlessly for hours because she would forget where she was going. She would write checks upon checks, and not have enough money to pay for groceries. Sometimes she would return the items and go back home, other times she would come to our house in tears because she couldn’t remember what she was supposed to be doing. Shortly after this, her doctor wrote a letter to the DMV and her license was revoked, however she still had her car.

My mom was able to get a judge to grant power of attorney and appoint my mother as her guardian, after it was determined that she was not able to make decisions on her own behalf. We sold her car and started to help pay down her debt, and made sure she was still able to thrive, living on her own, with some assistance a few days per week.

She also had bouts of extreme anger. She would call (mostly my mother) and accuse her of stealing her car, saying that she wished she was never born (this was among the nicer things that she would say) and that she never wanted to speak to her again. She also had a calendar and on it she would write comments like, “February 26, 2013 — Never speak to Ruby again.” It was really stressful on my mother, and on the rest of the family, but we were able to lean on each other for support.

It is not easy to deal with a family member with dementia, and it sounds like you and your family are doing your best to cope with the new changes in personality of your grandmother. I agree with Wendy that you should seek out information on getting Power of Attorney and Guardianship on behalf of your grandmother, either yourself or someone else in your family. Other than that, if it’s possible I would encourage you to speak with your family, reaching out especially to any family members that have stopped speaking with your grandmother, and use each other for support. Maybe if they can separate the words your grandmother has used as a result of this progressive dementia they can begin to salvage a part of a relationship, at least for the sake of you, who seem to be quite an invested caretaker of your grandmother. Perhaps you can meet with her doctor, or ask to meet with a specialist, to ask some questions about what you can do if she is having “episodes” or ways that you can better interact with her. Separate from your idea of counseling (which is a great idea, by the way), having input from a doctor might be valuable.

avatar Bethany May 6, 2014, 9:28 am

WWS.

You’re doing a good job, LW. You really are. But you need help, and you need to ask for it. You might even need to demand it.

Also, this letter should serve as a wake up call to all of us to make sure that things like POA and a health proxy are all lined up for our parents/grandparents/whoever. I know I’m the executor of my parent’s estate, but I’m not sure about the other stuff. After reading this, I’m going to make sure I find out.

mylaray mylaray May 6, 2014, 10:04 am

You sound really sweet and caring, and it’s really sad to read what your grandmother is going through. I don’t know what that is like, but it sounds very emotionally taxing already. And Wendy’s right that the burden does not have to be all on you. I don’t know what your situation is with the rest of the family, but they bear responsibility too. I have a husband with a chronic disorder, and I can’t emphasize enough how important it is to have a village of people: family, friends, doctors, nurses, social workers. Not only that but also don’t be afraid to ask for help from those people, which you’ve already started by writing here. Asking for help directly does not come naturally to me. It’s out of my comfort zone, but caregiver fatigue is a real thing and you just can’t keep wearing yourself out. And also, like Wendy said, you need support in this. You’re doing so much and giving a lot, but you also need to give to yourself in this time. In addition to leaning on your circle of people, I think a community (whether online or in person) of people who are dealing with family members with dementia could be beneficial to you, especially if you can’t lean on your family.

And I just want to reiterate how important having an advance health care directive/living will is for anyone, regardless of age, ideally before anything catastrophic happens. And power of attorney is also a very useful thing, especially with your grandmother.

LlamaPajamas LlamaPajamas May 6, 2014, 10:12 am

I’m so sorry for what you’re going through – I’m sending lots of internet hugs. I second what everyone said about enlisting other family members and your grandmother’s doctor to help, and I think finding a support group could be really beneficial in terms of learning about new coping strategies and unburdening yourself to others who understand exactly what you’re going through. This website has listings for isupport group meetings and online support groups:
https://www.alz.org/care/alzheimers-dementia-support-groups.asp

katie katie May 6, 2014, 10:44 am

yea, LW, its time to bring in the big guns, in terms of legal paperwork, community resources, and the rest of the family.
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one of jakes aunts stole lots and lots of money from his grandmother under the guise of helping her with her money management. my grandmother, when she was alive, got conned by the guys who come to your door and offer services but just never do anything and confuse old people into writing them checks. you need to protect your grandmothers assets through whatever means necessary, because it is very easy for someone to come in and steal stuff!

avatar Sue Jones May 6, 2014, 10:44 am

Does someone have Power of Attorney or Medical Power of Attorney? That can help you get her the help she needs. Lacking that, If she is a danger to herself or others law enforcement can get involved. Depending upon the state you live in, you can get 2 doctors to concur that she can no longer take care of herself to have her placed in a memory care center. The difficult part is getting her to see 2 doctors. It may have to wait until she has a fall or some other emergency for her to be seen by doctors declared incompetent. Or you can try calling a Social Services and see what they have to say.

theattack theattack May 6, 2014, 10:52 am

This sounds incredibly stressful, LW. It’s emotionally and physically exhausting to take care of a senior under any circumstances, but I can’t even imagine the challenges and the heartbreak that the dementia must be adding on. My advice is the same as Wendy’s. First find out if any family members can help. Help them understand that it isn’t your grandmother saying these things. It’s the dementia. Second, talk to a social worker who specializes in elder care. The social worker should know resources in your area and should be able to guide you more on what your options are. The social worker will probably tell you to talk to an attorney about the issues Wendy mentioned, so then do that.

Best of luck, LW. I really feel for you.

lemongrass lemongrass May 6, 2014, 11:01 am

I don’t have any advice- I have never been in or around your situation but I want to applaud you for what you have done. You are clearly a very caring and loving person to take care of your grandmother even when your parents didn’t show you a good example there. I hope you are able to find the support you need.

Guy Friday Guy Friday May 6, 2014, 11:26 am

I appreciate the Power of Attorney / Living Will idea, but unless she already has them drafted (in which case you need to execute them ASAP) given the descriptions that you’ve given of her behavior you’re just too far past that for those to hold weight in court. Those documents require that they’re signed knowingly, intelligently, and understandingly, and if it is later found that she was incompetent when signing them they’ll all get thrown out.
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Every state has some kind of program to assist people in your situation with potential guardianship filings; they’re often called the Department of Aging or the Department of Elder Services or something like that. Many of them even have attorneys who work for them who will do all the filing and processing on your behalf (not that you need one, really; it’s just making sure you follow the proper steps.) Call them, and get this guardianship filed right away before she risks harm to herself or others. The process can move very quickly; where I am the decision on the petition is legally required within 90 days of its filing for that exact reason.
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I don’t generally try to offer this here (for obvious ethical reasons) but I am on a national listserv for guardianship attorneys. If you give Wendy the OK to share your information with me, LW, I’m more than happy to contact you directly to specifically point you to a person or agency in your state to assist you with this.

avatar Painted_lady May 6, 2014, 12:34 pm

LW, I’m so, so sorry that this is happening. Dementia is about the worst thing to watch a family member experience, both because they’re miserable and they work really hard at making everyone around them miserable, and so it’s hard to get them to let you take care of them, and it’s also hard to want to take care of them.
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Aside from all the awesome advice Wendy and everyone else provided, I would begin preparing for what you will do when she needs full-time care, which will likely happen sooner rather than later. I know with my grandmother, the hospital would not release her after her last surgery without proof that she would be moving someplace with full-time care, whether that was someone’s house or a professional facility.
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An aside about decisions made for long-term care as well: much like any other medical decision, the reasons for making the decision you do are multi-faceted and intensely personal, and also, nobody’s fucking business outside the family unit and health care team. Whatever decision – whether home or assisted living – you make because it’s the one that works best for everyone. When we had to move my grandmother into assisted living, we had several extended family members who insinuated that we had “dumped” my grandmother, an opinion that was aided by the fact that she always implied that no one ever visited, because she often had no sense of time and couldn’t determine whether the last visit she had from a family member was in the last 24 hours (or once, when I was in the bathroom when she answered the phone). Sorry, on a bit of a soapbox, but this is a decision you want to research and make without the pressure of a deadline.

Moneypenny Moneypenny May 6, 2014, 12:57 pm

I am so sorry you’re having to deal with this! You sound so strong and caring, and I’m sorry you’re going through it mostly on your own. I have gone through similar situations as both of my grandmothers had dementia. It was extremely hard to see them slip away, and each of my parents had a rough time dealing with their last few years. My father’s mother was often violent (she came at him with a knife and he called the police and she accused him of attacking her). She also had a “friend” who took who knows how much of her money. Anyway, I second what Wendy is saying, especially the POA suggestion, and getting in touch with her doctor. She needs more than what you can provide for her at this point. Also, have you been getting support for yourself? I’m sure this is overwhelming and emotionally hard on you too, so if you can talk to someone about how you are feeling as you are seeing this happen, I’m sure it could help.

avatar csp May 6, 2014, 1:00 pm

LW, first, I am so sorry this is happening to you. All the comments so far are great. I would give you two other helpful ideas. Try and set up a phone system so each child calls once a week. Like Monday is one person, Tuesday is another person. So that someone is calling and checking in every day instead of everyone calling over the weekend. The second thing is remind yourself that when she says mean things, “this isn’t her and this isn’t personal.” Sometimes that can take the sting out of comments when they fly at you. It is hard to do but try and remember, this isn’t a reflection of her feelings but of her disease.

avatar AndreaMarie May 6, 2014, 1:15 pm

Along with what everyone is saying regarding POA, the Health Proxy is also very important, especially if her health begins to deteriorate. By having the Health Proxy someone will be able to make healthcare decisions for her when she is no longer in the righ state of mind to do so. Not only will this allow you to order care but also make end of life decisions. When my grandmother was put into the hospital with rapidly deteriorating health they discovered that she was filled with stomach cancer, my mother who had POA/HP told the doctor that they would not be pursuing treatment. Her health got worse and she was unconcious/unresponsive most of the days. Finally one night we were outside the room and watching he nurse for about 10 minutes trying to get an IV in (its the job of the hospital to continue to try and care/sustain life) it was at that moment that my mother made the hardest choice. She showed her POA/HP paperwork and asked that no more IVs or medications etc be administered as there was no hope for recovery and she no longer wanted her to suffer. My grandmother peacefully passed away that night in her sleep.

avatar Lucy May 6, 2014, 1:22 pm

I didn’t read all the comments, but having gone through this with my grandmother, I think your first stop should be a social worker. They know all the ins and outs of your various options, and they’ve seen it all before. Every state has an elder care department that can help you access all the resources avavilable and guide you through the bureaucracy. Good luck. You are doing great work.

avatar Sunshine Brite May 6, 2014, 5:38 pm

Check out eldercare options in her area! There may be a good fit for assisted living nearby. They have assisted livings now that look more like group homes in some areas with only four people living in a house rather than a big facility. There’s options out there. She shouldn’t be alone. The POA is a step in the right direction but it’s not the only action that needs to be considered right now. In my job now I’m helping people under 65 get connected with resources that they need to try and stay in the community if that’s possible or to get connected with facilities in the area if there’s not enough assistance. Contact the county she lives in and see if there’s any options available to her.

avatar _s_ May 6, 2014, 7:18 pm

We are dealing with my grandmother with dementia, and she had to be moved into a nursing home because she just required more care than my 88 year-old grandpa and 59-year-old mom could provide. Everyone is right on point. DO NOT try to do this alone. Where the eff are the kids? This should not be your problem. It is crucial to seek support from all the resources others have mentioned – eldercare agencies, social workers, etc. – and contact her doctor to explain the situation. Definitely also look info power of attorney, guardianship, and all these other items. And I really want to emphasize – SEE A LAWYER. Talk to a lawyer NOW about Medicaid and whether your grandma qualifies, and sort that all out BEFORE she needs assisted living or a nursing home – because trust me, that day is coming, and it’s better to be prepared and have all your ducks in a row, because that can run $5-6000 a month. Any money you spend on a lawyer’s aid will EASILY be recouped in just a few months once your grandma starts with care – and again, don’t try to pretend that day isn’t coming, because it is. And again, I’m just echoing the others, but you have to remember it’s the dementia that’s making your grandma act this way (though it sounds like she acted this way before, so there’s likely a mental illness issue to begin with, now being compounded by dementia). Trust me, my sweet grandma has turned into the “bitch from hell” (my mom’s words). Dementia is a terrible thing to live with. You don’t have to – and shouldn’t and CAN’T deal with it alone.

avatar JB May 6, 2014, 7:40 pm

Does your grandmother actually own a gun or have access to them? I think the first priority is to get that gun out of the house! I don’t know exactly how you’ll accomplish that, seeing as you’re out of state. But don’t let fear of her accusations stop you. It is just this kind of situation–people with mental health issuess having access to guns–that has caused so much tragedy. Perhaps the local police can even help you with this one?

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