My mom is 84 and having trouble caring for my dad (85) at home. His dementia is growing worse, he often refuses to eat or bathe and he no longer cares to socialize with their friends. He's also incontinent and she has difficulty keeping him clean. He hurt his shoulder and it bothers him so he wanders all night and screams in pain most mornings till around noon. That means she gets little rest and the doctors say there's nothing they can do for his pain. (He has no stomach due to stomach cancer so he can only take Tylenol which doesn't help.) Mom thinks an assisted living facility with a private room near her house would be a great option. She could spend time with him every day there and participate in activities with him but still maintain her own health and independence at home. My sister is infuriated and wants mom to hire round the clock care at home instead. Mom doesn't want to have to live with a third party in her small ranch style home and feels she'd be giving up any freedom she may have in the few remaining years of her own life. I see both sides. Each wants my support. Both my sister and I live too far away to be a daily or weekly relief system for our parents so I feel my mom should have the final word, I guess, but if mom makes this choice, I think my sister will completely cut her off. My mom is a higher strung person who doesn't deal well with stress and I know she's doing her best but truthfully, it might be better for my dad to be away from her for periods during the day because she gets frustrated and has meltdowns. But I can't convince sis. She's aghast that mom would even consider putting dad in assisted living and thinks it's cruel and cold. Needless to say, dad also doesn't want to leave his home or his wife. I do feel bad that my mom doesn't want to try home health first but with no kids nearby, I understand that she'd have to always have another person in her home and she's just not the type to be comfortable with that scenario.
Call the Area Agency on Aging and ask they visit mom and dad to complete an assessment. Or find a Geriatric Care Manager to help mom get this done. It would be very helpful to mom if sisters could get on the same page and support mom in her decision. It would make it much simpler for mom.
Get on the phone today and find your mother the unbiased support that she needs. It would sure help if at least one sister would visit while all this is occurring.
Your mother is an intelligent lady who has done her best and has researched what’s best for her husband.
He will get professional care and proper meds (injections of pain meds that your Mother can’t provide-no one needs to scream in pain). Sister has no say.
If your sister loves so far away that she can not help o n a daily basis or even weekly then she should have no say in what your Mom's life should be when it comes to care-giving.
For me it was safety that I drew the line at. As long as it was safe for me to care for my Husband, as long as it was safe for him I decided I was going to keep him at home. Luckily with the help of the VA and Hospice I was able to keep him with me. But I would not have been able to do so if it were not for the help I got.
There is another option that might make your sister feel better. (If her concern is that Mom and Dad will be apart...will not help if her concern that the cost of Assisted Living will eat into her inheritance)
Has Mom thought of moving to Assisted Living? If so they could move together. Mom would have help with Dad and later if she needs help herself. (Your Dad would probably transition to Memory Care within a short time) And your Mom would be able to come and go while Dad is cared for. No utility bills, no maintenance on the house, no home owners insurance, minimal food bills, probably reduced driving since most have vans transporting to shopping and other outings.
But again bottom line..this is Mom's decision to make not yours or sisters. Support Mom, I am sure this is not an easy decision for her to make and only she knows what she goes through on a daily and nightly basis. She probably does not tell you everything!
Also caring for an adult is nowhere near the same league are caring for a kid or teen. A lot harder to care for adult.
As for bringing age into caregiving, a person can be under 30 and it still be just as hard as passed 70.
I had to read this post a few times to understand and reply. I was shocked with your sister’s stance on your Mom’s need to have your Dad go to assisted living. It seems like her guilt is what is what is in play here. She has no idea what is involved in the day to day care of your Dad. Hiring a round the clock live in is not the answer to your Mom’s needs now are for a peaceful, less stressed life. Like maybe a vacation to see her children and grands or visit friends. Your mother is not abandoning your Dad she is making both their life’s better.
Your sister has absolutely no say in how your Mom handles your Dad’s needs and your Mom’s own needs. It’s the best decision for both your parents and both of you as well. Please support her at this critical time in her life.
I hope your Mom has all her ducks in a row should she need an assisted living situation when the time comes.
I hope you support your Mother in her decision. Your Mom truly has it all together and knows what is best for your Dad, and her.
Over a year ago I was taking care care of both parents in their home for seven months. My Mom has lived me me the last 7 years. I couldn’t do it anymore. So my Dad, now 89, with an “attitude” went to AL. My Mom, 92 with Alzheimer’s (with many medical issues including double incontinence) and I moved back to my duplex. My Dad adjusted well and I try to visit him a few times a week. If my parents had money my Mom would be in a nursing facility.
Again, please support your Mom and help with the transition.
Bless you all.
My uncle didn't want this for my grandmother. But we cant afford to have someone around the clock. It is up to your mother your sister will come to understand. My mother and grandmother are together and the place they are at is wonderful. I am able to see them everyday. I put them near me.
By the way my uncle never offered to take care of her. Tell your sister to put her life on hold and move in if she feel so strongly about this.
Second, around the clock care is very expensive. Would she be willing to cover the cost?
Your sister should not be telling your mom what she should or should not do as far as caring for your dad. No one knows the stress caused by trying to take care of someone with dementia. It sounds like your dad is in the later stages of dementia, he may do very well in an Assisted Living Facility (ALF). ALF's can provide a structured routine which individual's with dementia do will with. I will caution you that if your dad wanders and there is a chance that he would try to leave the facility (called elopement risk), then an ALF will probably not take him. If that happens you would need to place him in an ALF Memory Care or Skilled Nursing Memory Care Unit.
Finally, if your dad is wandering at night then your mom is probably not getting enough sleep at night because she is constantly being woke up by him or is worrying about him getting out of the house. She could very well be suffering from sleep deprivation and that would explain some of her frustration with him.
Playing a supportive role is important but may seem impossible without someone feeling betrayed somehow, or hurt.
I don’t know your relationship with your sibling or parents, so I can only advise as far as what I’ve known.
Generally, no one wants to leave their home, or their family, (which it may feel like to your Dad) and dread the adjustment of a new place to call home and how it also may seem one step closer to the end of his life. That’s normal, so it makes sense Dad doesn’t want to go.
He has to be honest with himself, his situation and be realistic when making this decision. I say this, because we all hope if our minds are somewhat still well, that we have some kind of control over our own lives, especially in the end years. Depending on his level of dementia & his ability to reason, is he able to be realistic? Does he understand and accept the state he’s in, and understand the level of care he requires and whether or not he can reasonably be cared for at home?(and whether or not in home care is affordable for them)
It is his home too, so why would he want to leave it if there’s a way for him to stay? It’s never convenient or comfortable to have others in your home or to have to adjust your life around other people but this is part of the changes that occur for most people in their end years, like it or not.
You didn’t mention how much care is required, or if your Dad is well enough that he will require help for years, months, weeks? Dementia can go on for years and of course, is progressive. Does he require round the clock care or less?
My mom had about 3 healthcare workers a day come by. They always called first and we were able to initially request the time of day it was best for Mom.
IF THEY CAN AFFORD IN-HOME care, then isn’t your Dad entitled for them to try it out?
Maybe your Dad only requires these kinds of short visits like my Mom during the day?
If more care is required, then it’s more adjusting but it’s peace of mind. Your Mom won’t be burdened with his care as she is feeling she may be right now, and your Dad will have more peace being where he wants to.
My Mom was the same as your Mom in the sense that she didn’t ever like people invading her space. Funny though, when she was the one needing them, it was suddenly OK.
Your Mom must consider that like my Mom was first to go, it could very well have been your Mom who was in your Dad’s shoes! Would your Mom want to feel pushed out because your Dad wouldn’t want to have people in their home? I’d imagine not.
No, your Mom shouldn’t care for him if it’s too hard and it IS HARD but she also shouldn’t be against being ‘inconvenienced’, by having healthcare providers there to both help him and help her! This is her husband of years and years and the father of her kids and that is his home too! Who does that to someone in their most needy, weakened time? Ship them off to be someone else's problem’?
Imagine one day if you were in the same spot as your Dad? Helpless and your other half wanted to relieve their burden of you so their lifestyle wouldn’t be cramped?
If the home care doesn’t work out-and your Mom would have to give it an honest go; then it would be time to consider sending him ‘away’.
Your Mom is thinking of what’s convenient for her and selling it like it’s what’s best for him :/ without even first trying the inhome care.
Inhome careworkers are very respectful and try to be as least intrusive as possible. They realize it’s their client’s home and that it’s a difficult time for everyone.
Eventually, he’ll progress to the point where he will most likely require living in an assisted living facility, but at home care for now, may work out in the meantime.
So far any decision I have made , such as staying in our home that he’s familiar with rather than moving a bit closer to them ( luckily they are only about 40 minutes away) they have agreed even tho they know I’m thinking of myself as well as I cannot add the burden of a move to my life at this time . I hope they will always realize that I love their father but , while I’m still of sound mind the decision is mine. I’ve supported them and their father their whole lives and when/if I make this decision it will have been made with great sadness but with a bit of self preservation as well . They help constantly but unless you’re living it 24 hours you have no idea what the caregiver is going through . They seem to support and understand this and have even mentioned gently that things will change and when they do they will support the changes I feel I need to make . Your mother deserves that same support.
I think that it up to your Mom what she is to do. Caregiving takes a huge amount of energy, and caring for an aging partner when one themselves is aging is extremely difficult. As your sister (and you yourself) are not able to be there with her 24 hours a day to relieve her burden, then your Mom should be able to make her own choice. Even if one or both of you could help, the final responsibility would still belong to your Mom. You could also be too much in the way, even if you are helping her. As a person who helps caregivers make these kinds of decisions every day, the only person who can know when they have reached the tipping point is the individual themselves.
When I counsel people at this point in their lives, I want to make sure that they are able to make this decision and carry it out BEFORE they themselves collapse. One such clients mine did so a few weeks ago because she is so committed to caring for her Mom. But Mom's needs have increased in the 13 years she has been living with her daughter and son-in-law.
I hope that when the decision is made, your sister will not chastise your Mom for the decision she has made, but be supportive. This is not an easy choice for your Mom. She is not being selfish, she is granting them both a greater freedom for the last few years of their lives. She is freed up from the daily challenges and fatigue of being wholly responsible for another person, and he is freed up from the guilt of requiring so much more care and assistance.
Despite the aging care statement: your loved one doesn't have to got o a nursing home. Yes, sometimes they do, because even with in-home caregivers, there is a huge amount of day-to-day oversight of those people coming in to help care for the loved one. making room for the extra person, personalities, scheduling, failure to show, language barriers as many are not primarily English speaking. Many at teh beginning of this journey start with in-home caregiving, but then find that it is simply not enough, because the Primary caregiver is still required to fully and actively participate. The burden may be lightened, but never fully removed. And at some point a lone caregiver without any support , particularly one who is aging herself, will not be able to provide adequate oversight to ensure that the loved one is getting good care.
In other words, hired caregivers need to be cared for as well, so the care taking shots from direct care of the loved one to oversight of the hired caregivers. Even if they are hired by an agency.
It is not an ideal choice, but life is often a chore between the lesser of two evils.
Love them both and support them both through this difficult time.
Side with your mother & fufill what she desires!
Things you all are experiencing have actually come to a head!
Bottom line.....Your parents quality of life & dignity is of the greatest priority and absolutely vital for them.
Mother is wanting what's best for her husband, getting the continuous care he needs. She can't do it! In turn, this will give her peace of mind and heart & Mother will the get rest she needs. It will be difficult enough that her husband & life long love will not be living with her in "their" home. She certainly doesn't want stranger caregivers in their home. But she can & will enjoy being able to go to be with him at the AL.... remaining close to him.
Another important issue is, mother is well aware that both her girls don't meet eye to eye on this even though she may not give much attention to it. Never the less, this is additional weight mother does not need.
High strung or not, sister is experiencing a reality check here & there's a lot of emotional turmoil.
In any event, the on going battle she's causing or having, it's vitally important sister put her feeling aside immediately. Sister needs to be strong for Mom & Dad. Especially mother!
Don't be afraid to move on this if sister doesn't. Don't be afraid of what she may do. Your parents are priority. Your mother needs your strength & support to fulfill her desires regarding her & her husband.
Blessings
As hard as it is, sometimes moving them to a care place is the best and often only good option. Focus on supporting mom's decision. For sister - as I said before she needs to put up or shut up. Until she can experience the whole 9 yards, she isn't going to understand. TELL her to take over for mom for a week and then rethink her stance on it.
Keep in mind that if Dad is screaming in pain most mornings until noon, that will upset the other residents at the facility, and they will need to find a way to control his pain (or his response to it).
Mom needs sleep and she needs respite. We began to look at memory care facilities when we realized we had no recourse if a family emergency were to arise and we could not leave her alone. We were amazed that her transition to memory care was so much smoother than we thought it would be.
Caregivers often die before the ones for whom they are caring. Support your mother before it's too late!!!