New here - Advice on how to make this situation any easier?

lake_disappointment

Hey guys

Was just looking for any advice you might have to help me and my boyfriend and his dad who seems to have dementia.

 

We don't have a diagnosis yet, we're waiting for an appointment at a memory clinic after being referred from the GP. We're in the UK but there are big waiting times, though we have just found out his dad has private health insurance so hoping to get in sooner.

 

Anyway, basically the dad can't seem to do much himself. He's ended up staying at my boyfriend's house and I'm wondering how long this is going to go on for. My boyfriend's brother seems to have shirked responsibility onto my boyfriend basically. The dad is very slow and definitely getting very frail, despite being a fairly fit 70 yr old. He is always losing stuff, has had some hallucinations, won't drink water. My bf cooks him lunch and dinner as he can't seem to do that. Thankfully he is still washing and going to the loo himself, though has difficulty dressing (t-shirts inside out sorta thing, sometimes walking around naked). He has tried going out for walks by himself but immediately gets lost. He gets lost in my bf's two bed flat and has a tendency to wander into my bf's room. I put signs up to try and help but still does it - the dad fell asleep in my bfs bed a few nights ago and then wandered in to his bedroom twice last night at 3am.  He is also very paranoid and resistant to anything, insisting he wants to buy a 6 bed house near to my bf, once he's sold his old house. He is constantly with us and we're not getting much time alone. We are thinking it is probably dementia, and after talking to a friend of mine who is a doctor she reckons it is too. Obviously not 100% certain though.

 

My bf suggested getting carers (though worded as friends), more to give him a hand, but his dad was very much unimpressed. My bf then suggested maybe the 6 bed house wasn't the best idea if he gets lost at his. He got a bit annoyed and then started going on about the doctors going after him and how they are in a conspiracy theory. He is also terrified of being put in a home. My bf and his brother doesn't have POA and is scared to even bring it up now while his dad is so paranoid.

 

I don't know what to do but I'm scared. I don't know how to make this any easier and how to get any time to ourselves! Especially as I know this is a long, drawn out disease - is this gonna be us for the next 4+ years? Just getting worse and worse?

 

I'm hoping his brother might help a bit but I don't know how likely it is. His brother insists him and the dad don't get on at all and he also has a kid so can't do as much. His wife seems a bit more understanding but idk how likely it is. There's also talk of the dad staying at his own brothers, but there is worry that we're shifting him about a lot.

 

Is there any way of trying to get his dad on board with carers on the house? Or are we just going to have to put up with him until his dad is seriously ill? Will it be any easier after a diagnosis? I am imagining his dad to be resistant to the bitter end at this stage. I am scared of how on earth we will ever get time to ourselves. If anyone has any tips or advice on making this any easier, please let me know. And also how to communicate to resistant parents!

Thank you so much!

May flowers

Welcome to the board, but sorry for the reason you are here. You will get a lot of good advice and resources here, I have found it invaluable during this journey. 

From what you describe it does sound like dementia and he already sounds like he is at a point of no longer being safe to live alone.

One benefit of getting a dx is that they can rule out treatable causes of dementia, and also can help you all plan as you consider stages and maybe any legal aspects that will be needed, like POA (I’m not sure if it is called the same in the UK). If it is dementia, it is a long road for sure, but there are resources - facilities and caregivers that can make it manageable for you.

 If you choose to take care of him yourselves, I suggest sitting down with your bf and discussing what that looks like, what kind of time it requires, and the emotional and physical strength required. We have done both - in home care ( 5 years) and placement in a MC facility (9 months). Placement was easier and he did well there, but it is important to stay on top of the care. My FIL’s being home now only works because I am on board with DH’s decisions and in many ways my FIL is like my dad. But the bulk of caregiving fell on me for a long time - I had to put my foot down a few times and insist we get more help. Be sure to share any concerns you have for what any arrangement means for you - and how much you want to be involved and are willing to sacrifice.

Your PWD sounds as as though he has anosognosia which means the PWD does not recognize they are ill. He is going to fight the idea of caregivers or doctors visits because he does not realize he has dementia. Many people have to use fibs to get their LOs to appointments, such as it is an insurance requirement, etc.

Your BF and BIL need to step in now and get control of finances and set up care. In the US many people contact an certified elder law attorney. His dad will likely resist but it sounds like is is past the point of making sound decisions for himself. Even his idea of buying a 6 bedroom house shows he is not using good judgment with money and many PWD have squandered their life savings on poor decisions due to cognitive issues.

It is a lot and seems overwhelming, I remember feeling that way, maybe consider prioritizing what needs to happen now for his safety and how to set that in motion.

JDancer

So sorry you are dealing with this, but happy you've found this forum. The advice here is priceless.

Glad you mentioned your location, please mention it in all future posts. Some things might be quite different in the UK.

Assuming a doctor visit doesn't uncover a treatable cause, such as a vitamin deficiency, I suggest action to take control of the situation -medical, financial, etc.-ASAP.

Try reading information on this site re communication with PWD. Master the Art of the "fiblet." Frequently, a harmless white lie- "Bob (the caregiver) needs to stay with us while his kitchen is being repaired, " can make lif easier.

I'm sorry the other son isn't being more helpful. Try assigning him specific tasks. "Can you pick up some groceries for Dad?," "Can you spend the night at our place while we're out of town?"etc.  Time spent alone with the PWD might help him understand how much help is needed. Doctor visits can be complicated, so I suggest you and your boyfriend go along.

It sounds like you're being very proactive, always a good idea. 

lake_disappointment

Thank you for your lovely and thoughtful reply a lot of useful info and I love the idea of steps to make things easier and less overwhelming.

I hadn't heard of anosognosia but certainly sounds like it! We will have to get some fibs in I reckon, because at the moment it doesn't feel very manageable and like it'll end up affecting our relationship, let alone my bf's job. I'd hate to feel he had to give up his career.

I am just not sure the BIL is on board - in fact he keeps also suggesting to get a 6 bed house too which is only egging on the PWD! They probably could afford it, but then that means waiting to sell the original house first which could take a year. I'm not sure if the BIL is just in denial perhaps, but it feels like he is living his life and my bf is slowly going to have to give up his. 

You said about me and my bf sitting down and chatting about it, which we will. I'm not sure if it's worth sitting the BIL and SIL too to discuss. They've said it's better for my bf to look after the dad, which is then directly affecting me too and I feel is unfair they are making life decisions for me. 

How long does dementia last for? I spose it varies, I'm just concerned as well if me and my bf want kids - I'm not getting any younger and how that is possible with a PWD.

And how on earth do they get control of the finances with no POA? And with the PWD denying anything wrong with him The bf can't afford carers alone anyway so needs his dad to pay for it. Gosh.

Hopefully we can figure something out. I really appreciate you taking some time out to reply - thank you.

lake_disappointment

Thank you for your lovely and thoughtful reply a lot of useful info and I love the idea of steps to make things easier and less overwhelming.

I hadn't heard of anosognosia but certainly sounds like it! We will have to get some fibs in I reckon, because at the moment it doesn't feel very manageable and like it'll end up affecting our relationship, let alone my bf's job. I'd hate to feel he had to give up his career.

I am just not sure the BIL is on board - in fact he keeps also suggesting to get a 6 bed house too which is only egging on the PWD! They probably could afford it, but then that means waiting to sell the original house first which could take a year. I'm not sure if the BIL is just in denial perhaps, but it feels like he is living his life and my bf is slowly going to have to give up his. 

You said about me and my bf sitting down and chatting about it, which we will. I'm not sure if it's worth sitting the BIL and SIL too to discuss. They've said it's better for my bf to look after the dad, which is then directly affecting me too and I feel is unfair they are making life decisions for me. 

How long does dementia last for? I spose it varies, I'm just concerned as well if me and my bf want kids - I'm not getting any younger and how that is possible with a PWD.

And how on earth do they get control of the finances with no POA? And with the PWD denying anything wrong with him The bf can't afford carers alone anyway so needs his dad to pay for it. Gosh.

Hopefully we can figure something out. I really appreciate you taking some time out to reply - thank you. 

May flowers

lake, you definitely don’t want to harm your relationship or your bf’s job. I really hated the idea of lying to my FIL, but when it comes to keeping him safe, the “art of the fib” has saved our sanity! For example, if your FIL has life insurance, you could say it is required for renewal.

I believe getting things in motion early can help, because proactive is better than reactive imo. I did some searching and I think in the UK the concept of a CELA is called a SFE there (solicitors for the elderly) - I’m not 100% sure and I don’t want to steer anyone wrong. Here is a site I found where you can read about and search for attorneys: https://www.informationnow.org.uk/organisation/solicitors-for-the-elderly/# maybe it will help.

We were able to get a DPOA by setting up a meeting with his financial advisor. He trusted him more than anyone as the “expert” and followed his advice. We let the advisor know where he was and his dx and he worked it all out for us. Very thankful for that. That might work for others especially if they are early in the process.

 If the BIL and SIL don’t understand dementia, or are not on board with getting him help, there’s not much you can do. Many of us here have had to go the road alone - it seems there is always one main person responsible for making the tough calls and performing or overseeing the care.

How long it can last depends on the type of dementia and other health issues. I have read somewhere along the lines of 8-12 years for Alzheimer’s and Lewy body, and 5 years for vascular, but it is highly individual. And that is from the onset, which could be a few years before a diagnosis. My LO has vascular, and is going on 7-8 years with that dx, as a healthy person. Much of that time was not as hard as the past couple of years, though. In our case, my FIL was able to live alone with us checking in daily. Stage 4 - 5 was about where we knew we had to move him with us (and then memory care) - when we could no longer safely heat up food, manage meds, and was getting lost. 

Keep asking questions - there are a lot of people a lot more knowledgeable than me, who can give advice

Rescue mom

Health care and legalities can be very different in different countries. But a couple things you said really resonated with me. The hard reality is, dementia does not get better. It only gets worse. When you ask how long it can last, it’s basically a lifetime—however much longer he lives. Many here have had moderate to severe worst case, for 10-15 years. He could pass sooner, of a heart attack or some other disease, but that’s unpredictable. 

Meanwhile, he will need more and more help with the most basic parts of daily life, including supervision to just make sure he doesn’t hurt himself or cause damage. They become incontinent, and may poop any and everywhere; they may try to “go home”, run away, even though they don’t know where that is and it’s long gone. They often accuse you of stealing their stuff; (they lost it or put it someplace weird); they often become violent or aggressive. 

It will absolutely affect and change your life, as long as you and your BF are together. The two of you need to have serious conversation about this. Your BF needs (in my view) to respect your needs, and your life, when dealing with other family.

 IME, a lot of family members are very happy to let another one take on all responsibility. If your BF wants to do that, fine. Many here have simply accepted the fact that they will be caregivers with no family help—although I think most here are already older than you.

 But you have to be on board, and know what this is going to take. You both need to recognize it has a huge impact on *your* life, too. Yes, it sounds like they are making decisions for you—but only if you and BF allow them to. Maybe BIL will step up, but honestly, if not by now, and with a kid already, they’ll probably want you and BF to handle it. 

 I’m sorry you’re in this situation, because it’s not fair, and it’s really hard. Caregivers do sacrifice a lot; we do this because it’s family, or our spouse, etc. Many will say it’s their duty.  But most have years of marriage and grown kids already. Pretty much everybody says it’s the hardest thing they’ve ever done, and never imagined. 

Please read through this and the spouses forum, for a glimpse of whats ahead. Even if the topic heading doesn’t sound like “you”, there are usually tangents and a lot of helpful info there. It’s really hard on a marriage, and there are vast studies showing the health toll paid by many caregivers—not the PWD, the damage caused by the stresses and demands of caregiving.

Again, IME, it’s really, really hard to have babies/kids, AND care for a PWD 24/7, unless you have a lot of other helpers, either paid or family, on a very regular basis. Same for any work outside the house. Even the most docile PWDs usually need constant supervision, at very least.

Caring for a PWD is much like caring for a big toddler. You often have to do what’s needed, which is not what the person wants. You become the parent. They may get angry, or not like it, but you still must do what’s needed to keep them safe. You fib, you coax, you bribe, but you can’t use reason or logic. And you can’t “convince” them. You just have to *do* whatever is needed, whether hire help or place in care home.  

Very few PWDs “want” to be placed, yet most adjust well, and many say the facility was actually better, with more constant care, meals and socializing. It can be hard getting them there, but if that’s what has to happen, then that must happen. They cannot reason anymore, their brain is broken. You and/or BF are in charge.

jmlarue

I have no knowledge of the long-term care options for the aging or demented in the UK, but you need to start the research for that. Caring for a person with dementia is a long and difficult slog for anyone who needs to work everyday. It's tough on marriages. It's near impossible to maintain a less-committed romantic relationship. Finding privacy and the freedom to just go and do something without a third wheel is beyond difficult. Getting Dad set up in some sort of assisted living or elder care will benefit everyone. It may even help get the brother and SIL involved in Dad's care since there's no fear of having to move him into their home or provide the hands-on daily caregiving. There's no shame in recognizing that both brother's are not in a position to take on the daily needs of their father's care. A suitable placement in an elder care facility is the best way to go.

​fesk

lake, everyone here can offer excellent advice. There's a wealth of knowledge on these boards that have helped me tremendously. I recommend you keep posting here. However, if you need specifics about what services are offered in the UK, you may want to check this site that is based there: https://forum.alzheimers.org.uk

Ed1937

Lake, I'm so sorry you are dealing with this while you are figuring out your future with your boyfriend. You said "They've said it's better for my bf to look after the dad, which is then directly affecting me too and I feel is unfair they are making life decisions for me. ". Understand this. They cannot make life decisions for you. You can let them manipulate you, or you can do what's best for you, your boyfriend, and his father. If you want to, you can simply walk away from all of this. Or you can see if there is some common ground that will satisfy both you and your boyfriend. You should both understand that if you become caregivers, your relationship will be challenged. I suspect it probably already has. It might be better if he is living in an environment like assisted living, where he can have at least some help. As he progresses, it will be memory care for him. At least that's what we call it in the U.S.

One thing is certain. If it is dementia, and a family member becomes his caregiver, it will be the hardest thing they have ever done. You cannot argue with a PWD or use logic. That doesn't work. I'm giving you a link that will help you understand dementia. It is a very popular link on these boards.  https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

Quilting brings calm

In the United States, there is something called guardianship or conservatorship.  It’s used when the person with dementia is not capable anymore of signing a power of attorney.  It’s also used when the person  with  dementia has signed a power of attorney but refuses to go into a facility- because a power of attorney only allows someone to handle their legal and financial affairs, not control over them.  Guardianship or conservatorship require going to court, proving the person  is incapable of managing their affairs and getting the judge to make you the authority,  it comes with stringent reporting to the court.     At some  point, your BF may need this to get his father into assisted living etc.  

You can have a child while you( he)  are caring for his  father, but your relationships will all be complicated by his father - because he will need daily and eventually every  minute of the day care if he lives long enough.  So vacations, work, evenings out, etc all are affected.  It’s eventually like having a 6 foot tall, 180 pound toddler.

Unless your BF is old enough to retire ( age 62+ here), he should not quit work because he’s affecting his own financial future.  He should not  use his own money taking care of his father  either for the same reason.  He should  use his fathers money  for his fathers care.  That’s all part of the reasons to get power of attorney or guardianship. 

As others have said, this could go on for a decade or more.  Depending on his age, physical health, and how fast his  dementia progresses.  Progression moves at different rates for individuals and types of dementia and how far along when diagnosed.  The farther along a person is when they are diagnosed, the shorter the time. This is only because someone diagnosed at the moderate dementia level  has had dementia  for longer already  than someone  diagnosed with mild dementia  

You and your BF need to sit down with his siblings at least once and explain what your level of commitment will be.  He needs to explain that if they  leave their fathers care  up to him, then they get no say so where the money goes or where their father lives.  This is because your lives will be the ones affected most  by those decisions.  You can’t make them help, but you need for them to not cause stress and trouble by making the care more  difficult.   Thinking that a window make with dementia needs a six bedroom home is an example.  Does your BF’s brother think he ( the brother) is going to live with his father?  Is he going to help maintain the house and property - because his father won’t and your BF won’t have time to.  Does his brother think you and your BF are going to live there? 

mommyandme (m&m)

My thought is your BF needs to get legal control over his father’s affairs, financial and medical,  immediately.  If “the dad” can still be deemed competent to sign there’s no time like the present.  This needs to be done before his living arrangements can be finalized and should be first on the list of tasks.  If your BF is going to be primary caregiver for the dad then he should have ultimate control, IMO.  Where the dad lives is secondary to the appointment of who will be managing his health care and assets.  

I suppose a diagnosis could be important and high on your list for legal control to be transferred if his cognition is questionable . 

Sorry for these hardships on you and yours.  

lake_disappointment

Thank you for your reply! We had a breakthrough - the BIL took the dad for a bit and I think is now realising just how much care the dad needs. He's had to take unpaid leave to figure it all out! 

We can't get the dad to sign a POA or anything. Very frustrating. He's paranoid we're all trying to scam him. We're trying to get carers - there's a waiting list but we don't know how he'll take it!

chamann1526

Your story sounds very 'classic'.  My husband wasn't diagnosed until after a fall and broken hip this past january. I'd suspected dementia, but no one would listen to me and MH of course thought he was fine.  I suspect this has been in process for the past two years. Now that we have a diagnosis (no one has mentioned dementia to mh however).  The good news is now that I have the diagnosis I can take steps to learn to cope with the illness. He is incontinent (after his surgery in Jan) and thinks he will get stronger one day.  The best advise I can give to you is to get involved in support groups for yourself and other family members and learn all you can about the disease.  Get some caregivers to give you a break so you can breath every now and again. Take good care of yourself daily.  The situation changes by the hour. Don't take anything your loved one to heart. Learn to read between the lines.  Communication is the key.  There are a lot of videos to help you learn.  The smarter you are about the disease the easier it'll be to get along and read the patient.

quartlow2

Mom had aphasia first, then dementia started to creep in. Dad health began to really suffer the longer he did his best to care for mom at home. I wished we knew sooner how bad it was. Once we got them into Assisted Living, as hard as it was to see them scared to be there, it got easier... for them and us. 

It is very common for the caregiver's health to fail before the LO with dementia. Think about it, in AL there's a staff of people on hand 24/7 on 2 or 3 shifts per day. When your LO lives in your home, it's just you 24/7. You put off your own healthcare... sometimes your own hygiene. It's hard to get a good night's sleep. But a new shift of well-rested people come to work 2 or 3 times a day in AL. You'll still need to visit and advocate for your LO but at least you'll have time to take care of yourself so you can think clearly.