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My 87 year old grandma that is suffering with dementia moved in with us about 5 months ago. It hasn't been bad for the most part...she has good days and bad days but, this past weekend she went completely crazy. She ran out of the house with a safety pin and a pair of fingernail clippers stating I was going to hurt her (I'm the only one who consistently is patient with her outbursts) and that I'm hiding her money upstairs (we live in a single-story home--no attic). I didn't try to argue with her because I've learned that they're beyond the point of reasoning. I chased her down in the rain and begged her to come back inside and eventually had to call 911 to have an ambulance take her to the hospital. She ended up having a UTI and is much better now--even embarrassed about how she acted--but, my gracious, I'm so nervous with her staying with us now. I haven't been able to get a good night's rest since. She was diagnosed about a year or so ago with mild dementia but, it was always forgetting to eat, take her medicine or forgetting what day of the week it was. She is still able to bathe, feed, and toilet herself. She even likes to go get our mail and walk around the yard. We have never had a problem with her. She would have paranoia about her money after the move into our place but, it never made her run away. My husband and I are both working full time and we really try so hard to take good care of her. We are both in our mid-20s and I'm pregnant with my second child and my first is 2.5 years old. I really don't want to put her in a nursing home but, I don't know if I'm doing her justice by keeping her home. I'm always on top of her medicine and doctors appointments but, with work and going on 2 young children...I don't know what the right option is. I would appreciate any and all advice from experienced Alzheimer's/dementia caregivers. Or anyone with experience with putting a loved one in assisted living/nursing home.

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Dear Spaulding,

You are my daughter’s age.

We just moved my Mom to a care home after having her with us for one year, preceded by 6 years of caring for her in her own home. 

During the past year, my daughter (a full-time college student) gave up her social life, many nights of sleep, and one of her part time jobs to help me care for Mom.  My husband became our cook and took over care duties when no one else was available.  I can’t begin to tell you how much it affected my health and job security. We ensured 24-hour care for her. And, spent thousands of dollars on in-home care just so we could go to work.

Based on our experience, and of others I’ve met along the way, I would tell you this -

First - love yourself, your children and your husband.  Place these things first in your life.  They should take priority over any care giving responsibilities you accept.

You are a kind, loving granddaughter (like my own daughter).  No one else can take your place in that.  Allow others - professionals - to “care” for your grandmother.  They are trained and equipped.

Next, invest your time and energy now to find the best and affordable long term care placement for your grandmother. 

Dementia is a degenerative disease. There are no cures. Your love will not be enough as the disease, inevitably, progresses.

Lastly, make your Grandmother’s move to a care home or assisted living a high priority. Transitioning to a new home is difficult for elders with dementia. The sooner your Grandmother can move, the sooner she will adjust to the change and learn to be happy there.

Wishing you all the best.
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Reply to Gardens
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The rule of thumb is, if you’re asking about a nursing home, it’s time for a nursing home.

I went through it with both parents. Stubborn dementia, the whole 9 yards. But I’m in my 60s and retired. You guys are far too young to let this become your full time job, which it will be in short order.

Take a look at her finances. Visit some facilities in your area. There’s no way you can do this at home with a young family.
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Spaulding18 Aug 15, 2018
I get where you are coming from. My grandma is having more good days than bad right now. I know we have a lot on our plate but, family is family and I just want to make sure we all have a good quality of life considering the circumstances. Thank you for your answer. I appreciate your input.
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She will eventually need a nursing home because she will require more care than you can provide, when you reach that point is a very personal decision based on your specific needs and beliefs. There are those who will wonder why you ever considered having her live with you in the first place and at the opposite end of the spectrum those who would sacrifice their health, wealth and sanity trying to keep someone out of a nursing home - most of us on aging care fall somewhere in between. I think you need to sit down and rationally plan for every possible eventuality (sundowning and combativeness, sleep disturbances, incontinence, help with ADLs, frailty, etc) and decide for yourself where your line in the sand is drawn.
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Spaulding18 Aug 15, 2018
Thank you. I appreciate your answer and I agree it is best to have a plan for everything.
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I wonder if you might feel better about the possibility of moving your grandmother into residential care once you have a much clearer picture of where that might be. Tackle it from the other end, if you like.

Since the safety pin/escape incident has been definitively chalked up to the u.t.i. and therefore isn't related to her mild dementia, you do have a little time in hand. So use it to do a thorough job of research, aiming to find a place that will meet your grandmother's long-term needs and allow you to maintain a close, supportive relationship with her.

At the moment, assuming that your grandmother is generally competent, you will need her agreement to move her into care. But for one thing that won't always be true, and for another, more important thing, her chances of enjoying a good quality of life will be hugely improved if she's fully functioning when she arrives.

What I'm getting at is that this decision is not only about your capabilities or even your children's environment. It can be an active, positive choice to provide your grandmother with the right setting for her individual needs - which would not be the standard family home with untrained caregivers and small children underfoot.

Drop the guilt, and focus instead on what is really best for her. Best of luck, let us know how you're getting on.
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I wanted to add one more consideration. My 88-year-old mom is in AL because of mid-state dementia, and after the trauma of moving her into the facility, in about two weeks, she was loving all the companionship of friends about her age. She met and made good friends with another woman, and they spend the days doing the many activities (movies, concerts, games, art) together at the AL facility. And the CNAs at the AL could not be more caring and loving. If you find an active, good place, it can be not a place to "dump" her but a new "apartment" of her own. My mom has never been happier. Family visits can be fun, and you can take grandma out for a special lunch or dinner. AL can be the positive outcome you want for everyone.
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Reply to SharoninUtah
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When an elderly person gets a UTI, it is very common for them to have hallucinations and delusions. It sounds like this was the case with your grandmother over the weekend. It is very likely that the behavior you witnessed this weekend was due to her UTI -- not her dementia. If that is the case, you should see the "craziness" disappear as the UTI clears up with treatment.

If she is still able to bathe, feed, and toilet herself, she is very high functioning on the dementia scale and it is much too early to put her into a nursing home.

My grandmother did not have dementia, but she would act absolutely crazy if she had a UTI.. On the other hand, my mother had a brain illness that caused rapidly progressive dementia, and she needed care the last 3 1/2 months of her life as she became unable to perform any "activities of daily living" for herself (bathing, feeding, dressing, toileting, etc.) Don't be too quick to admit your grandmother to care just because she has a dementia diagnosis, especially if there is some other condition present that can cause the symptoms you mentioned and is easily treated with antibiotics.
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Spaulding18 Aug 15, 2018
The next day my grandma was so bent out of shape about how she acted. She was back to her pre-UTI self. She was caring and kind. She didn't come out of her room the whole day because she was so embarrassed. I had to repeatedly tell her that we all have good days and bad days and that we love her no matter what.
My fears are stemming from the uncertainty of this disease. I'm just scared that it will happen again and who knows if I'll be able to run after her with 2 children or if I'll be at work. I do feel that now that I am aware of the complications of a UTI, I know I can be more vigilant about it. There are just a lot of what ifs. I feel like maybe it wouldn't hurt to have a back up plan though. Thank you for taking the time to answer my question.
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"She ran out of the house with a safety pin and a pair of fingernail clippers..."

Where was your toddler during this incident? How terrifying and baffling for a small child. I understand that grandma was treated for a UTI after this incident but unfortunately dementia doesn't get better, it gets worse. And she will probably have another UTI eventually -- what if she freaks out and feels the need to defend herself from your child when your back is turned away for a moment?

Seems to me this situation is no longer appropriate for your family. Your children come first.
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Spaulding18 Aug 15, 2018
Thankfully my husband was home and was able to tend to my toddler. I think that's why I'm struggling so much with this and decided to ask this question on this forum. I have nightmares about something happening to my children especially when we have a newborn on our hands. Thank you for giving me your input. There are a lot of what ifs on both ends of the spectrum for me. My children do come first but, my grandma is important too.
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When my mother had urinary tract infections, she became combative and paranoid like Grandma. At one point, she lashed out at me in the hospital and clawed my arm. I still have the scar. The nurse was right there and couldn’t grab her in time. I was a grown woman, crying in the ER of the hospital, because my “mommy” attacked me and I needed bandaging. What if I’d been a toddler or a defenseless newborn? People with dementia can be jealous and impulsive. What if the baby’s crying upsets Grandma and causes her to act out against the baby?

It sounds like you’re trying to convince yourself that Grandma isn’t really “that bad”. Well, my mom had chronic urinary tract infections and became combative whenever she had one. As adults, we were wary and vigilant, but a toddler... As SnoopyLove writes, this situation doesn’t come and go. It will get worse. It would be a shame if some tragic event had to happen to cause you to seek out a facility. What is the reason why you, at your young age, have been charged with this responsibility? Did you accept without knowing what it would involve or were you made to feel you “had” to do it? If no one else wants the responsibility of caring for Grandma, you are well within your rights to research facilities and place her.
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Reply to Ahmijoy
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My first question is where your parents, I mean your grandma's son or daughter? What are they doing and why its YOU and not them took the grandma?
I have the same hard dilemma (but I am a daughter, not a granddaughter) with my mom, who has stubborn dementia, bad esophagus, should not eat solid food, but never listened to me and that's went to aspiration pneumonia and feeding tube. now she is eating puree food and doing OK in rehab, but I am almost sure that if I ll bring her home she ll start eating solid foods and everything repeats in a week. So I am crying every day but looking for a good NH, actually found one but there is waiting list. But my kids are grown up and I have no idea how its possible to take care of dementia (even mild) person with 2 toddlers???
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First of all if you have the time do your research. A small residential group home is less expensive and was perfect for my husband. Dementia patients do better in a small calm environment. Don’t get “sold” on all the amenities. They don’t care if there are linen tablecloths or all the WiFi devices; watch how they care for people. Check that they are licensed and certified. You can look online for complaints. Those can be red flags. Visit with someone who has a LO at the facility and get their feedback. Group homes also are less likely to have staff turnover which is HUGE with someone who has dementia. Also get power of attorney and her living will in effect. Maybe see an elder law attorney to see if she qualifies for Medicaid or other assistance. Group homes also tend to be one inclusive price where assisted living facilities tack on all sorts of extra costs. Do your homework and good luck. You can be a loving granddaughter again and not an exhausted caregiver.
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geevesnc Aug 17, 2018
Small residential group homes in my area are double the price of assisted living. There are so few available, as well. It's really sad.
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