My mum has dementia and lives on her own in the west of Ireland. I live in Scotland. I have two brothers in England and my sister lives about 20 minutes’ drive away from mum. Mum and sis have never had an easy relationship but she has been doing her very best to keep mum going in her own home for the last 5 years. However sis has her own issues and drinks from about noon everyday (she has had a reliance on alcohol before mum's decline but the care situation isn't helping). She shops, picks up and organizes medication, takes to appointments and visits about once per week (it used to be more but they fell out a few weeks ago - difficult to explain here) but I think that generally she's feeling worn down by it all especially as she also lives alone and has few friends. I try to be supportive by making sure I phone for a chat at least once a week, and I call mum most days. I am currently staying at mums for a week to try to give sis a break as well as to see how mum is. One of my brother was here with his wife and child about 4 weeks ago and my other brother is coming over in November to stay.
Mum has caregivers come in everyday in the afternoon for an hour. They generally remind her about medication, do a little tidying, chat and make her something to eat or a cup of tea. Mum is able to get up and get herself dressed. But her mobility is worsening as she suffers from osteoarthritis and chronic pain. This stay I've really noticed that she's forgetting much more than before. She's generally not too bad in the morning and has a solid routine of getting dressed, getting toast and tea, and taking medicine. Some nights are better than others but tonight for instance she didn't seem to know what to do with her dentures, whether she'd taken her tablets or not (she takes a painkiller and a sleeping tablet each night) - it was ok because I was here to help and comfort. She's also often saying now how awful it is to be losing her memory.
I'm feeling sick and worried about having to go home soon and leaving mum in a house all alone as her confusion and memory get worse. It’s breaking my heart to see my once fiercely independent mum fighting for any scraps of independency she can hold onto with her failing memory. She stayed with me, husband and two kids about a year and a half ago while she recovered from an operation and discovered that although I want to look after her (I feel truly awful saying it) the reality is that I became depressed as my whole life was about her and desperately trying to get time with the kids and husband. My husband didn't want to be in his own home and the kids retreated to their rooms, so it's just not an option. That fact breaks my heart too.
Anyway my question is really, what happens now? Is it a case of waiting for something to happen that forces the situation? There is no memory care or assisted living facility here. The only option seems to be a care or nursing home. My auntie, also suffered from dementia and ended up in one of them after having an episode of hallucinations that hospitalized her. And an uncle ended up in another after breaking a hip. Mum would be devastated if she thought that was where she was going to end up. I just don't know what to do.
I’m in the same position but I’ve moved in mainly because it’s my husband who has an early onset dementia, he is still working age.
It’s draining and I’m lucky in that my children have all flown the nest so I can dedicate my time. The visiting carers will be looking for signs of deterioration and will feed back to their employer. Try talking to them and explain your concerns.
My Grandparents both ended up in a home in the West of Ireland, Castlebar, but I’m unable to advise you either way as to whether this was satisfactory or not because I was young and my parents dealt with this.
I personally am not intending to put my husband into care but that’s because I can currently manage him and I’m able to live here. Can you access more care for your mum, up the care plan and get more hours? Is there a day care centre that she could use one or two days a week? It’s such a difficult situation for you all and all you can do is your best. I think you are all already doing that. I wish you the very best.
This could be anything from longer hours with the caregivers to caregivers that are there 24/7
Is there any possibility that she could wander off?
With winter approaching this could be a fatal error if she wanders to the mailbox, tries to go to a neighbors, or even take the garbage out.
Is there a possibility that she would leave the stove on? The water running?
My thought when caring for my Husband was that I would keep him home as long as it was safe for him for me to care for him and as long as it was safe for me to care for him. But yours is a totally different question..your mom is living alone. I would not have left my Husband at home.
I even changed a vacation once when it suddenly dawned on me that I could not leave him alone for a week or two. And at that time he was dressing himself, bathing, and doing many of the things you say your mom is doing. Cognitively he just seemed to be at the point where I did not feel he would make good decisions.
I think the things like dressing, bathing and making a pot of coffee were so automatic that he did them without even realizing he had done them. But if something came up unexpectedly I do not think he could have handled it.
Don't wait for an emergency begin looking now for a place for her.
I don't know when she was last in a Memory Care facility but many have changed and they are not like the "old nursing homes".
At this point it isn't about what your mother wants or what you believe your mothers final years would look like, it is about placing here somewhere she is safe. You can either wait for a disaster to happen or plan now. I would advocate for planning now as a disaster is always worse.
Finally, it is no one's "fault" as old age took away her independence, not you. As hard as it is, it is the best decision for her, you and your siblings.
she’s isolated with only tv for company she’s confused anxious and
scared. She needs to me taken care of in safe environment where she can socialize.. interact with people…play games… bake … and have eyes on her 24/7 … doctor on call … nurse monitoring her meds …not a nursing home but a well reputed care home for
those with dementia. She shouldn’t be expected to live like this waiting for someone to visit ….
a mother can take care of 4 kids but 4 kids can’t take care of a mother !!
that’s sad truth
Is your mum safe alone in her home?
Is she at risk of falling and unable to get up?
Is she able to contact others reliably for help?
Is her home clean and safe to live in?
Is your mum healthy?
Can she take her medications every day without fail?
Does she feed herself 3 healthy meals a day?
Does she clean herself and change her clothes daily?
Does she have health issues that are being dealt with?
If you answer "no" to any of these questions or other questions along these lines....
then is it time for mum to have people all the time.
Does mom have money to pay for in home help - to help mom and sis? Does family have money to pay for in home help. If answer to both is no, mom needs to go to where she can get 24 hour help when/if she needs it. Don't wait for the big catastrophe to happen. Yes a major event could happen at a facility, too, but at least help would be there immediately.
Have family conversation to see if all of you can swing it to keep her at home. If all can't commit, it's time to make family decision. If mom still has family or friends who visit her in the home, try to find something in that area. Even if mom in facility care, siblings will have to commit to regular visits to the area so that all the burden doesn't fall on one sister.
I feel your pain. My parents recently went into a nursing home here in the States. It is hard. They are not completely happy, but they are safe. They have caring people watching over them. They have healthy food and people to interact with.
Nothing in life is perfect and I also struggle with the guilt of their not wanting to be there. But I watched them for 3 years struggle and fight against what made the most sense. We researched various senior communities, but they would not budge. They did not want what they did not want. My dad is blind and my mom has dementia. We tried in-house care for them, but eventually we could not find a company who could provide 24/7 care for them in their home. I live in a different state as does my sister.
My point, you have to do what makes sense for both your family and for your mom. You are doing this out of love and concern for her. Things will not get better until you and your family make the hard decision to place her where she will be safe.
I'm so sorry you have to go through this. I wish I could say that there is an easy solution, but unfortunately we live in a world that has not yet prioritized the needs of the elderly. So as family, we are left to make hard decisions.
I respect you for reaching out to others to find answers to your concerns. This is a good place for answers. So many people are going through this process. It is not easy.
Continue to research your options but do not beat yourself up. You are doing all that you can. Accept that and try to find some peace with the fact that you love her and only wish the best for her.
That's it. She cannot be left living on her own anymore even with caregivers coming in.
There physically has to be someone in the house 24 hours a day.
Or she will have to be moved into a type of board and care home where there will be staff around 24 hours a day.
Living with you in Scotland is NOT an option. You and your family were miserable when she was with you for the year and a half. Learn from that lesson. Those were the good days. Move her in now with dementia and your homelife will be wrecked.
Please don't do it.
You and your siblings all needs to get together and make a plan for what you're going to do with your mother. Maybe at this meeting the lot of you can talk about your sister's alcoholism and how dangerous it is to have her driving around half in the bag to run errands for your mother. That's pretty bad.
I think your best bet is going to be a moving a caregiver into your mother's house.
If not that then she may have to go into a nursing home. Of course no one wants that but if live-in help isn't an option, and none of her kids can relocate to live with her or move her into their homes, then really there is no other choice.
If you can legally place her now (if a live-in caregiver isn't an option) then that should be done now while she still has enough of her own faculties to acclimate to a facility.
But....hmm...they also better be the one cooking.
but i do want to make a suggestion i might have missed … unplug the stove or have the gas to it disconnected.
Our mother refused to move into a home with her dementia and we had to get court permission (mandate) to move her. A POA was not sufficient to force her to move. We used caregivers like you for years, but eventually it was an impossible situation. The caregivers would often quit or not show up, one time they all got covid, and our mother was verbally abusive. Eventually, she nearly killed herself and burned down the house and we had to force her into a memory care home.
You are not there all the time, so your assessment as a visitor may not be consistent with actual life. Her behavior may change when you are visiting.
I had a bunch of technology things to help with my Mom in her home, fortunately there was good internet in her area. A video camera that covered the living room and front door so I could tell when someone came in or out via an app on my phone. A motion detector in her bedroom so I could tell if she got up in the morning and moved around. And pendants that detected a fall and she could press to alert for an ambulance.
That all worked to keep her in her place for a couple of years. Then she fell and had to stay in the hospital for a bit. The hospital, caregivers, and authorities would not release her to her home again as they said she was unsafe. So we were forced to move her to a nursing home. Everyone says that was the right thing.
However, my Mom has now been in the nursing home for 4 months and is completely miserable. She hates it there, cries every day, calls everyone she can find to try to get someone to get her out. But it was always a one way street putting her in the home. We had to liquidate all of her assets to pay for it, here in the US there is virtually NO HELP for seniors until you completely run out of money. So there is no other place she can go, she's there until the end. She is safer, gets help when she needs anything, gets better meals, etc. But she is very unhappy and mentally not in a good place.
There really is no good scenario when you get to that situation. Good luck.
The next part sounds brutal. I was talking to my doc's wonderful social worker, who helps people with arrangements in all kinds of situations. At the time hubby was in the hospital but about to come home, and I had realized that he only had enough money to live for about 2 years max with home helpers (which cost here about $120,000 a year!) I asked her about the two local "homes" that Medicare will support, which take people who are really unable to take care of themselves or whose families can't handle it. And families, like me, DO have reasons, like Marge, that taking in a relative with dementia would destroy things for other members, especially children. Anyway, I asked the social worker about the two homes -- if they were nice and lively or dreary and basic. She said that they were pretty basic -- no stimulating classes -- just feeding and cleaning and giving meds. People mostly sat in their wheelchairs all day. But -- this is the part I won't forget -- she gently said, "It helps them die more quickly."
The more I've seen of people in hubby's new home, the more I realize that dementia and long-time deaths are awful for everyone, no matter where the patient is. If the patient is being kept at home out of an idea of love, it can work beautifully IF the patient is accepting help and being good-natured. I have a friend whose wife is like THAT and he can keep her at home -- but barely. But many times keeping a patient with dementia at home can create a home situation that is damaging to spouse and children, and the work required, the anger and demands, and the awful experience of watching, minute by minute, the patient's decay -- if I and many other caretakers can imagine ourselves in the patient's shoes, we may realize that the only solution is allowing the inevitable death to come, and that we, in a similar state, might really want to die. This may mean (when money is an issue especially) putting the person in a home.
A few days ago I was visiting hubby in his AL. There is a friendly, smart man -- no dementia -- who is 100. He seems much younger. Recently he fell and broke his leg and has struggled in re-hab. He'll never walk again but he goes to classes. I said, "It's so nice to see you here!" He said flatly, "I wish I weren't here. I wish it were over."
I think it’s time to consider a placement. Between the dementia, her mobility issues, chronic pain and minimal on the ground supports, it would be the safest and most loving choice.
While I have only spent a few weeks in Ireland, I met many elders accross UK, Scotland & Ireland who fiercly will stay & defend their right to live in their home. This is the gen that either lived through the war or were brought up in the large shaddow of trama after it. These are resilient people.
So I guess I'd be asking Mum outright - what does she want. Yeah I know I'll be howled down as folk with dementia can't make lifestyle choices when it becomes unsafe, this is more of a *moral/value* gauge.
Does she want to feel safe? Have people around, is needy about your sister's time? Lonely?
Or is she a loner? Most content on her farm, land, in her house etc.
Many old farmers die with their boots on, on their land. Or country folk in their small village. Would choose that in a heartbeat over the warmest, snug nursing home in a bigger town.
Do you get along ok with your sister? Would it be comfortable to ask her what SHE wants? Does she want Mum to stay at home? If so, until when? As long as possible? What does 'not longer possible' look like to her? Eg wandering at night? A bad fall?
My LO is also supporting another to stay at home. When questioned, it appears there is no ability to plan, no thoughts to 'not possible' almost a martyr mode of until the end of time... which is why I could not change the dynamic. I could only work on my own worry.
I think we may have different but similar situation.
It took me a very long time (and some therapy) to realize that this is how he wanted to live his life and to stop worrying every minute, especially every time I would call and he didn't answer the phone for one reason or another. He, like the examples above, just wanted to stay in his own home. He had been in a nursing home before and refused to go again even though he would be "safe" and well taken care of.
In the end, he fell out of the wheelchair while I was out of town and we didn't find him for 3 days. He died the next day and because I was so used to him making a comeback, I never expected it. I could have a lot of guilt to deal with, but I knew he was tired of living like that and he was OK with being the master of his fate, so to speak.
I think there are more people around like that that anyone realizes. This hypermedicalized and sanitary world is not for everyone.
Your mom probably needs to be in a care home. You all need to find a solution so you sister only has to care for herself, which she is obviously also having trouble doing.
I only know what the options are here in the US. I can tell you that a good facility will give your Mom social interaction and opportunities for activities and meaningful engagement with others. She will get the medical attention she needs. Maybe it would help make the decision less stressful if you saw it as an improvement and not negative thing for her life.
No one gets to stay on this earth forever. Not everyone gets to live as long as your Mom. Even people younger than her have had miserable existences. Count your Mom's blessings: At least she has children who care about her. This is more than many elders have.
Maybe consider meds for her mood and anxiety. Dementia robs people of their ability to work from their reason and logic, so she is less and less able to bring her mind around to a calmer state on her own. She now needs help to do this.
If she can get into a facility, this is a good thing *for everyone*.
I sought therapy to deal with the ongoing gnawing anxiety over this.
I now accept I did what I could.
It will be what it will be.
Some folk do have to move to NHs (good or awful), sometimes after a bad fracture. Some folk will depart this world before that.
I hope you can find peace too. Keep chatting here if it helps.
My mom is in assisted living due to her dementia. She can still do many things and remember some things, but other times she is quite incapable of mostly everything and needs someone to give her her meds, cook for her, put her laundry away, etc. She would not be at all safe home alone. She lived with me and it was too much work for me to handle, even with caregivers for 6 - 8 hours a day.
Are there two options there? A care home OR a nursing home? Or are they the same? If a care home is different and less restrictive than a nursing home, I would get mom signed up ASAP.
Is power of attorney a thing there? If so, does someone have it?
Can the hours of her caregivers be increased? Especially later in the day when she tends to get more confused. Sounds like sundowning to me.
You can wait until something bad happens if you are OK with thinking that mom would prefer that to going into a nursing home. These situations and decisions are not easy.
Have you discussed this with your siblings? It will likely be impossible to get full agreement amongst you all, but whoever has the legal authority can make the decision.
Best of luck.
I understand the heartbreak. In all truth, the folks on the ground there (this includes the sister you mention who is doing so much despite her own problems) are responsible for saying "This isn't working; it's time for placement".
I am so sorry. This is a tragedy. It is a tragedy for those of us who are aging and still mentally and more or less physically capable (I am 81) but it is more a tragedy when there are unsafe conditions.
Push will come to shove on this. As you mention you already know, SOMEthing is going to happen. Knowing all you now know, is that something you can live with? I mean can you live with a tragedy that occurs when you have known for some time this isn't safe? I ask that honestly. Some CAN live with it. Some feel that it is preferrable to being imprisoned in an aging facility, that final loss of everything one treasures and knows.
I wish I could give you better guidance. I would get together with all siblings and then with Mom. It is time for the hard discussion. I think it is time for safe placement. If you are asking me, we live much too long today. I include myself. I am so ready now to "go" and leave unknown all that is coming down the pike at me with such great certainty it cannot be avoided. I think I am not alone in feeling that way at all. It is often discussed here.
I wish you so much luck and I am so sorry.