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daniellej Asked October 2017

We have the space to take in my grandmother, but my husband is vehemently against her moving in with us and thinks it's way too much work. What do I do?

I am 29 years-old with a great husband, home and one year-old. I am my grandmother's POA and have handled everything for her because my parents are deadbeat drug addicts. Her dementia has recently worsened, not to the point of wandering off, but she has absolutely no short-term memory. She calls me upwards up 40 times a day, hysterically crying because she can't remember where she is - I had to put her in a nursing home. We have a guest room in our basement and she has social security income that could cover a caregiver coming a couple times a week. She would be much happier with us and it's getting to the point where I dread answering her calls and visiting her because she's just so upset. I feel terrible I don't know what to do. I work from home, my mother in law comes over 2-3 times a week to watch my son. I could realistically have her live with us, we have the space, but my husband is vehemently against her moving in with us and thinks it's way too much work. I just don't know what to do.

Countrymouse Oct 2017
Danielle, I'm sorry your poor grandmother is feeling so unhappy; but you need to realise that putting her into your home wouldn't cure that. She *still* wouldn't know where she was, it would still frighten her, but the difference would be that 24/7 you'd be responsible for dealing with her fear.

Your husband is right, this is way too much work. Grit your teeth, visit her on a regular schedule, turn your phone off when the calls get too much (give the NH an alternative number for emergencies), and wait for this phase to pass. I hope it'll be soon.

Midkid58 Oct 2017
You are very sweet to want to help grandma--BUT, the needs of your family (Hubby, baby) MUST come first.

Do have grandma evaluated to see what might be done to make her more comfortable where she is.

She isn't going to "improve" as she ages and having twice weekly care isn't nearly enough. You will get dragged into it and you'll come to resent it, and her. Dementia patients can't be reasoned with, so you'll spend a lot of time with your 2nd baby. I know this is hard, and you already are doing the best thing you can for grandma. Bless you for stepping up!!

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Momsgoto Oct 2017
If your husband is vehemently opposed, how can you consider this?

SueC1957 Oct 2017
NO, NO, NO, NO, NO! Absolutely NOT. This will be the biggest mistake of your life!

I have my 94 year old stage 7 Alzheimer's mother (end stage before death) living with us and we are barely able to keep our heads above water! You two are way too young to have your lives irreparably disrupted. You would be doing your 1 year old son a huge disservice. Mommy would be too busy with grandma. He would have to vie for his mother's attention because "grandma needs this or that". That's just wrong. To have a dementia victim in your home is like having a child but one that doesn't learn and can't be reasoned with, their behavior only gets WORSE. You will have to have eyes in the back of your head and, even though you are young, having her there will take a huge toll. She also could potentially cause a dangerous environment for your small son with her confused behavior.

In the end stages of dementia you will be feeding her, changing diapers, bathing her, dressing her, walking with her to make sure she doesn't fall. Every need will have to be taken care of by you. That should scare the begeebers out of you!

You say you work from home-well, forget that. Is your mother-in-law going to watch your grandmother too, so you can work? See, this arrangement WON'T work.
You will be SO tired that your relationship with your husband will suffer. You won't have ANY time for him because you'll be trying to divide your time between your son (whom you SHOULD be interacting with) and your grandmother. Hubby will become resentful and start to back away from you, believing that all this is your fault. It's hard to regain the intimacy that you once had.

Compared to you guys, my husband and I are old (late 50's and 60.) We've been married 10 years. We have more life experience than you but we are having a most difficult time managing this family situation. Mother screams out any time she feels like it. She becomes combative when things don't go her way. This is not unusual behavior for late stage Alzheimer's. Don't forget that dementia is ongoing, it only gets worse. THEN what? Put her back in the same nursing home that she came from? I can tell you from experience, they DO NOT adjust easily to changing residences (or any other change, for that matter). She will "fit in" in about a month and a half.

Read the book; The 36 Hour Day, A Family Guide to Caring for People Who Have Alzheimer's Disease, Other Dementias and Memory Loss, by Nancy Mace and Peter Rabins. Your hair will stand on end! I'm telling you, there's a big difference changing the diaper of a 1 year old and changing the diaper of an 80 year old who is screaming obsenitites at you in the bathroom as you're trying to clean her up. THIS will be your life. Is this what you want your toddler to see?

Last thought; Do NOT go against your husband's wishes. What if he won't help you? You WILL regret it. This time, he is right. He is considering the impact on his family and has found it to be too stressful. Smart man! DON'T sacrifice your little family's lives for an old woman who will adjust to the nursing home in time. You did the right thing by placing her there. You're a good granddaughter. God bless you for caring and stepping in for your (sick) folks.

Talk to the facility to limit her phone calls to you to a couple of times daily. If not possible, turn your phone on silent or block her for the hours you would be doing other things. Dementia victims WILL manipulate you to get what they want.

I believe your thinking is motivated by guilt for placing her there. Your child is too young to manipulate you yet but kids play that game too. If she begs hard enough and long enough, you'll cave and give her what she wants. You've got to be the adult and stand your ground (with grandma and later, son) when you don't believe what they want is in their best interest (moving in with you or a big candy bar). Life's hard and sometimes you have to be the "bad guy" who says "no". Hang in there.

GardenArtist Oct 2017
Danielle, you've gotten good advice. I'd like to shift the focus for a minute and raise the issue of her living in a basement guest room. Some issues to consider:

1. Safety. Unless the basement has a walkout option, available bathroom and kitchen, and is insulated, heated and air conditioned, she'd have to be climbing stairs every time she needs something that's not in the guest room. If it's not a hazard to her health now, it could become so as she ages.

2. In addition, there are certain code standards for living space in the basement, specifically, window escape access in the event of an emergency.

3. If an emergency were to occur, do you think she'd be able to use the escape window? People tend to become frantic in emergency situations and her dementia might spike and confuse her even more.

4. She's now confused as to where she is. Another move to your home, even with you there, might increase the confusion. It's entirely possible that the confusion as to where she is will continue if she moves in with you.

You've obviously in a difficult situation, especially when your husband disagrees. And unfortunately when dementia is involved, situations don't get better.

golden23 Oct 2017
Please do not even consider this. Your husband is strongly against it and that is the first priority. As others have pointed out there are several issues that make such an arrangement unsuitable - your young child needs your love and attention, a basement suite has features which don;t work for a senior, dementia which progresses to require more and more care. The frequent calling indicate that she is agitated and probably has memory problems. She needs an assessment to see if her meds can be adjusted to help with the anxiety she is experiencing. She is much better off where she is, with 24/7 staff. It is way too much work for you. Keep advocating for her at her facility. She is very fortunate to have you.

choaticblack Oct 2017
I thinkyour husband is right.
ive lived with someone with dementia because her daughter couldn't cope after six years of having her live with her at her home and its got so bad emotionally it was hard to watch to see how much her condition has taken everything from her.

I had her move in with me and it got to point where even I couldn't cope she has gone to a well good home since and we visit it all the time but she cant even walk and doesn't know who we are.

I know what your going through and its a kind gesture and all what your trying to do but it will mess your health and emotionally take it out of you.
I thought about what I did and it didn't do any good despite doing the best we all could. and I think about when I wasn't not well and I need help who's there for me?? carers care but who cares for the carer?

They need 24/7 care and you cant turn your back for a second its harder than its made out to be especially when they move into your home its nothing like working with them at a home because end of shift people can leave and go home and live a normal life but its exceptionally harder when its a loved one.

if you let her move in id urged you it should only be for a small amount of time.

I'm sorry if my advice isn't great but Id wanna make sure you do right thing but think of the welfare for yourself and your family because believe me when I tell you its not a walk in the park.

I'm 25 and I'm so knackered that most days I'm very depressed now and am going through other things too.
hope you do right thing and look after yourself. 

Grammyteacher Oct 2017
Dementia only gets worse. While it is amazing that you love Grandma so much and want to care for her, you need to understand fully what that will entail.

You can never leave her alone... Never. My husband and I care for my mom with Alzheimer's. He and I made this choice together and we take care of her together. Earlier on, I could do most of it alone but as she progressed, I needed more and more of his assistance. She went through many stages along the way...some nice, others quite challenging.

She is now at stage 7. My husband and I rarely go out together...but we do spend lots of time together at home. We have to take turns going to weddings, bday parties, etc. One of us goes, one stays with mom. Mom is cannot walk anymore, actually she can't even sit up without support. She is a dead lift to get her from her bed to wheelchair to recliner. She is double incontinent, so we have to change her every 2-3 hours. To prevent bedsores, she has to have her position changed every 2 hours. She can not control her hands so we hand feed her and give her drinks. Her legs are contracting, stay bent, so it makes moving her even more challenging. She has a delayed swallow so we have to carefully watch her as she eats and drinks so she doesn't choke. My mom sits and rambles verbally all day... It sounds like she is yelling at you but I think she is just working so hard to try to tell us something. It breaks my heart. 

Full-time caregiving is extremely time consuming. I would not change my decision to care for my mom but do not think it is doable for all people. I certainly would not have done this without the total support of my husband. Read up about what all is involved and only make a decision that both of you are ready to support.

Sunnygirl1 Oct 2017
I might have professionals evaluate her to see what level of care that she needs. If she is crying hysterically all through the day, I would have her evaluated by a geriatric psychiatrist. Mental distress is just as painful as physical pain. I'd explore what treatment there might be to help her feel better. My LO, who suffered with Vascular Dementia, also had a lot of anxiety and depression. Daily meds really helped her feel better and she became very content, without feeling drowsy at all. Also, keep in mind that your grandma likely calls so much because she forgets that she just called. So, a plan should be worked out to address this.

I would caution you that people with dementia can't be left alone for even a short time, past the early stages. They are like a toddler. They often have sleep disorders and stay up all night, they normally become incontinent and have to be changed every couple of hours, and may ingest non-food items, mishandle appliances, or harm themselves by accident. I'd read a lot about what their care entails and discuss it with your family, before taking this on. I would also question having a young child with you as you care for her, because often they lose control of their boundaries and filters and their behavior may be unpredictable. It's a lot to consider.

I'd question if the facility she is in is watching her enough. That many calls of her in distress is disturbing. Why haven't they tried to address this? I'd arrange a meeting and get their input. Maybe, they aren't equipped to handle someone with her progression. Is this an Assisted Living or Nursing Home? I found that a Memory Care facility served my LO so much better. She got the constant attention that she needed and really settled down when she arrived there. If the resident is not getting the proper level of care, they seem to be less content, imo.

I'd read a lot of the personal stories on this site about others who are doing what you are considering. It will give you a lot to think about.  

pamzimmrrt Oct 2017
If she is in a nursing home,, why are they letting her call you 40 times a day? How does she get anything done, like eating or activities? They should be engaging her more, so she calls you less. I would address this with them, and perhaps see about removing the phone? They can call you if there is a problem, or allow her to call you once a day. The must know she has dementia? My fairly with it 87 year old mom moved in with hubs and I a few years ago.. and our daughter is an adult and out of the house, an it has been stressful. I dread when her memory gets worse,, her frailty is hard enough.

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