Grandchild acting as CG and needs any/all advice

KrysRosie

I'm 24 and very suddenly became my grandma's caregiver. My grandpa passed suddenly in February and my parents and I found out that he was hiding how much my grandma had declined in the past year. Due to Covid and them living 3 hours away we hadn't seen them since Christmas of 2019. So while we new of the diagnosis and spoke on the phone regularly, my grandpa would only tell us that she had to stop driving and she struggled to keep up in conversation. Over the phone she seemed mostly normal, other than having to repeat things a few times. This lead to us discovering how bad she was when we arrived at their house in late January. 

She can't cook, clean, remember basic hygiene, and can't retain information past maybe half an hour at best. She also claims she is bathing when we know she hasn't, she forgets she has medicine to take, ect. My mom and I stayed with her through February and then come March I had to return home. Due to lack of space at my parents's house, we decided to move my grandma in with me. So all of March I did my best to make my home safe for her and as of last week we moved her in. 

We told her it was just for a visit at first because she refuses to believe she needs help and can't live alone, 3 hours away. But now she asks every day when she can go home and gets very upset when I tell her she's living with me now or that we can't take her home. 

So I guess I need any advice on what to do. My mom is handling the legal stuff but isn't able to help much with the day to day things. I'm not sure how to go about getting a home aid or how I can help ease my grandmas anxieties or help her realize she can't live alone, getting her to bathe, or let me wash her clothes. I really just need any and all advice anyone has

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Iris L.

Ditto what Victoria said.  Grandma has anosognosia and is unaware of her limitations.  You will have to learn work-arounds from the other members.  Read a lot of threads.  You or your mom will have to make all decisions, too.  Better your mom.  Get on with your life.  Your young years will be gone before you know it. 

 Iris L.

M1

Hi Krys, glad you found the forum. I agree with Victoria and Iris, your mom needs to make other arrangements for your grandmother. But until that can happen, one strategy about t h e wanting to go home is simply to defer-don't try to reason with her or get her to understand, not gonna happen. Just say something like yes we'll look into that as soon as we can, when the weather is better, as soon as mom gets back, etc.-and then distract: hey do you want some ice cream, let's go watch tv, etc. We all learn to do this day in and day out. Good luck.

Read not only lots of threads but under Solutions too for good tips

dayn2nite2

Agree with the others that it is not appropriate for YOU to be the caregiver here.  Other arrangements need to be made.  Why are you at your age supposed to put your life on hold?  No.

I am noticing an awful trend lately, of grandchild after grandchild enlisted to move in with grandma or grandpa or vice versa and the actual children of the person with dementia are involved only peripherally, with the bulk of the hard work being done by the grandchildren.

This needs to stop.  You are looking at putting your entire life on hold for 5-10 years at the very least while everyone else continues their lives.  You are going to have to simply give your mother a deadline of when grandma needs to leave your home and other arrangements need to be made for her.  Give them a generous 3 months to find an alternative.  You cannot stop your life at this time.  This is your mother's problem and she needs to step up unless she herself is disabled.  Even if she cannot take her in, she can certainly put in the work to find a facility for her.

Cynbar

I agree 100% with the other posters. I don't think you realized what you were in for when you agreed to this plan, but care of a dementia patient is too much to expect from someone who is only 24. Your grandma will likely need 24/7 care soon, if she doesn't already. Are you prepared to put your like on hold? You shouldn't be, at your age you need to be building a life, you'll never get these years back. Care of a dementia patient is exhausting in the best of circumstances, you already have the repetition and poor memory, you are likely to soon have to deal with anxiety, increased agitation, incontinence, and so on. It's not fair to ask this of you, your mother and her siblings (if any) should be taking the lead here. Please tell your mother that all of us here are dementia caregivers, and we think this is too much for you to handle going forward.

MN Chickadee

If your family is going to pull together and share the load this may work, but it sounds like a bulk will fall on you which is just not right. You will end up giving up your future for this. Education/job opportunities, earnings, experience, romantic relationships, retirement contributions will be out of reach for years if you are responsible for grandma. It is far too much for one young person. The people who successfully keep their LO at home usually have a team of family and/or paid staff, or are retired and without other commitments. It's time for a family meeting where you outline expectations, timelines, and a plan. Reach out to your local chapter of the Alzheimers Association; some have social workers on staff who can help facilitate this kind of family meeting and provide guidance.  You need a timeline to get out of this and find grandma the care she needs either through significant hired help brought to the home or move her to a memory care facility in your area. In the mean time, I would do some reading or videos about dementia. Understanding the Dementia Experience (a free online PDF) and Teepa Snow videos are good places to start. You will have to find the right communication techniques for her. Therapeutic fibs are essential. Validate her feelings and distract. When she asks to go home say next week when my car has had its oil change, or when the weather is better or after so and so's birthday or whatever will fly and distract with a treat. Rinse and repeat. You can't reason with her, it will only make things worse. There are threads here on getting a PWD to bathe. It takes finesse. For washing clothes you will have to mostly work behind the scenes and do it when she isn't noticing. Do reach out to the Alz Assoc for local resources. Most places also have a county Agency on Aging or something similar. If you need a PCA to come in right away, you might try care.com or an agency. Call the person your friend or a cleaning lady or a someone doing volunteer service or whatever it takes to put grandma at ease.

Rescue mom

I strongly, strongly second what others have said. You should not be doing this. It may be time for your mom to hire help at home, or investigate placement and Medicaid, which most people need. Facilities today are not what they were when your mom was young. They can be very, very nice, and the constant attention, help and socialization often helps the person with dementia do better than they were before.

Meanwhile, do what MinnChickadee said. Don’t discuss or ask your gramma about what to do. Don’t ask her. Tell her. She is beyond rational input or decision making. You just do it, as much as possible. Wash her clothes when she’s not looking (or when she is, just do it without talking about it, as a routine thing).

Offer to help give her a “massage” with a wet wipe, at least, if bathing is tough. There are lots more tips on this if you look through past posts. 

 Tell her she can go home “later”, when the car is fixed, when the road is repaired, when the broken pipes are her house are fixed, when the weather is better, or the heater is replaced, etc etc. Rinse, repeat, she won’t remember hearing it before.

Don’t tell her she “can’t” because of dementia or Alzheimer’s (unless she wants to). Her brain is not functioning, she cannot understand reality or logic. Yea, you will have to fib sometimes. We call that using “fiblets”. That’s better and kinder for her, than the truth, which just upsets her.

But she has a disease that will only get worse. She’s had a long life, and her path is set. Your life has barely started and you should be able to live it. Your parents need to find helpers with dementia experience.

zauberflote

KrysRosie-- your heart and love are huge, and it shows. I am sorry for the loss of your grandad! We've had a handful of "grandchild caregivers" here in the past few years, and their lives were very difficult. 

My sons were 27 and 30 when their one grandmother died at 93, and they were 29 and 32 when my mom died at 92. There is NO WAY either of these two men could have managed (much less hands-on given) care for either frail, very elderly, grandmother. This brings up a question-- if you'd been a son instead of a daughter, would your parents have decided on you as the carer-of-choice? 

You don't say how old your gran is, nor how physically robust and healthy she may be. If she's young and strong, exit-seeking and bath-resisting behavior will become vigorous. How long can you go without sleep? Likely you have work and/or school going on, and sooner than you want, gran won't be able to be left alone. If the (hopefully very temporary) solution continues to be you and only you, please ask your mother to find the in-home care and manage it, find doctors and make appointments to your schedule, join a local support group (but maybe not the one you might join lol), and other such things. 

You are probably perfectly capable of doing all this for the rest of gran's life, but only at a fearsome cost to yourself-- health-wise, emotionally, and definitely being robbed of much of your financial and emotional future. Your parents cannot contribute to your Social Security earnings. They cannot keep your friends for you. This is a decision that only you can make, but I'm afraid I agree with everyone else so far-- this may/can easily turn out very badly for you, and we don't want that. 

CassieW

There’s a free 24/7 helpline run by this site at 1 800 272 3900 that helped me.

I’m holding space for you and your grandmother.

Nursing professor

Suggestions from nursing students in a BSN program in NY. Many of the students were your age so I thought they might be helpful and able to identify with your situation.

 I would advise the granddaughter to take her grandmother to a social model day care. Even though the grandmother has memory and cognitive impairments, its important that she interact with others and still do activities throughout the day. Enrolling her in a social model day has the double benefit of also providing respite for the granddaughter

One student said that she had the following experience. When her elderly relative woke up from a nap she said she missed the bus to go home. She didn’t recall that she lived with me now. I had to reorient her and let her know she was living with me now. I distracted her by asking if she was hungry and wanted something to eat I showed her a tray of snacks and she chose an oatmeal cookie and an animal cracker. This distraction was very helpful.

 I would go off what she was saying to create more conversation and to calm them down slightly. I would listen and try to understand their situation. Even with feeding them when they didnt want to eat. I would make picking her next meal fun and kind of keep her more engaged in her care.

Try to redirect patient like you said to reality but if that doesn’t work then redirect when requests to return home are made.  

When I’ve worked with dementia patients, I will try to get them to describe the thing they’re talking about. If the patient keeps asking to go “home,” I would ask what color the house is, etc

I think the granddaughter can really benefit from type of social work to help organize things

I think this a lot of responsibility on one person and they should have a family meeting to decide what the next step in her grandmothers care. After the family meeting they will need a professional to help with what type of care is needed and maybe suggest day care.

Providing types of incentives for the family member to cooperate and encourage them to participate in their daily care

There are support groups where she can talk to people in same situation as her. They can share experience, coping strategies and support each other. Look for support groups that help adult grandchildren care for someone with dementia symptoms.

https://www.caregiverstress.com/dementia-alzheimers-disease/symptoms/stages-of-alzheimers/