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.
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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.
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.
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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 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*.
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.
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.
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 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.
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.
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