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Old 01-13-2022, 01:47 PM   #1
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Default Dealing with parents dealing with Dementia

I've been mulling over posting something for a long time. For the last year or so, the situation with my parents has put me through hell. But I think I'm going to be a little Raw in this thread, because if it helps at all, I'm grateful. Its also a little cathartic for me, its a place that maybe I can dump some of the baggage that I'm dealing with.

Frankly and I'm not a crier. There have been a lot of real breakdowns with myself and my family. There's been a lot of anger and broken relationships within the family as well.

Anyways, my mom had a bad fall about 10 years ago, and suffered a bit of impairment. She basically became a little less then she was, but was still functional. Over the last lets say 5 or 6 years, Dementia has taken a solid hold of her. Its insidious, it does start slowly and sometimes the signs are unrecognizable. The person becomes forgetful, loses interest in things that they liked doing (reading, cooking, going outside). Weird things like food preferences change. My mom went from loving chicken and seafood to hating it. Suddenly one day your looking at everything as it accumulates and you might not realize how far things have gone. My mom's personality changed completely. She started being really restless and moody and prone to outbursts and acting out. She started talking in nonsense, nothing made sense. She started talking about her kids by their names and acting like they were strangers.

Meanwhile on the caregiver side which was my dad, they go through emotional changes as well. They suffer a lot of trauma and their personality changes to. They get frustrated with the changes in their significant other. They are prone to dismissing discussions around help because they come from a generation where issues are an in house problems. With my Dad it became a lot of denial and indecision. For example we talked to them about putting them into long term care together, and my dad would agree, and then get pressured by my mom and then pull back and believe that he could handle it.

The biggest thing to watch for beyond behaviors is things like extreme fatigue, quick weight loss as nether of them ate. The care giver bringing up things like not being able to control behaviors, or off hand remarks about his wife acting out in some kind of violent way.

You have to understand, and this is where a lot of fractures happened. Is that the care giver believes he's doing the right thing and everything and won't welcome external help. He's got it, or she's got it. But since us as kids weren't there 24 hours a day you miss a lot of things that are going on that are creating trauma.

Also for the elderly there is an outright fear thing that has to be addressed with a loss of control. They're going to take my spouse away . . . . They'll take her from me and she'll forget me. These are all arguments of why they don't accept help. There's also a protection mechanism that if someone comes in and see's what's happening with a professional eye, that the primary care giver will believe that he or she is going to be labeled as a bad person or abusive or whatever.

With our mom it finally got to the point where I went for coffee and my Dad was extremely agitated, he was angry and emotional, he couldn't do it anymore and he basically wanted my mom out.

This is the toughest decision and where mistakes are made. While there are some respite beds in long term care that are there to either give a person a break, or transition them to long term care in a safe environment, they're tough to get into and you might end up waiting. Also it can be expensive to do that.

With my mom because us Kids knew we weren't capable of taking care of someone with extreme dementia, and with my dad unable to do it, we ended up admitting her to emergency and they admitted her to what is basically transitional services.

This is where you can end up getting into long term care discussions.

Obviously there is a public route to long term care, you can be assigned a transition nurse, that can help you navigate the waters. But it can take a bit of time. But the hand off is that its a lot less expensive then Private care.

With Dementia you really need to find a facility that offers memory care, they specialize in dealing with extreme cases and getting your parent into a structured environment with a lot of help on the day to day things that you aren't capable of.

Just to backup, us kids did a lot of research on long term care options both private and public. Make sure you do your research, especially with Covid out. there are lots of private spaces with flashy advertising, so you need to research ownership, lawsuits against the facility, things like how they've dealt with Covid and frankly how many people died. You should do the same with public as well. Look at things like their drug and restraint policies, you have to make sure that your comfortable with how they deal with things.

Personally we went the private route, for the most part my parents saved their money well. I won't go into pricing. But the private route was the quickest route to get my mom out of the hospital and into a good environment. We can look at transitioning to a public facility at a easier less stressful place knowing that my mom is safe and well taken care of and local to my Dad so he can visit.

I want to stop for a second and sing some praise to the healthcare workers. The hospital isn't the best place for someone with Dementia. The wards are crowded. There are lots of people with lot of behavior difficulties in there. Its noisy and chaotic, which is the worst thing for people with Dementia. However the nurses have been very kind to my mom, done their best to keep an eye on her and give her some structure. My mom is a bit better then she was. She smiles and laughs. She's put on some weight. However she still wanders like crazy and gets. I do know that it can be overwhelming for the nurses as 3 of them are taking care of a lot of people.

Anyways, we've worked on the transitions, its important to make sure that you understand the requirements for the long term care and you coordinate with their transition nurses and your family doc for things like capacity tests, the required mental and physical checks, and make sure that you are following up on it as transition can't happen without that, and the system is kind of overwhelmed.

As well make sure that you have everything legally done, with us we took over the role of the primary care givers to make all decisions from my dad, so we had to review all of their power of attorney stuff, and all legal documents that have to do with their decisions and for example finances. Consult with a lawyer if you are freaked out they can help you navigate things.

Anyways, long story short we have my mom transitioning to LTC at the end of the month which is a weight off for now.

Be sure that you are watching their spouse, my Dad basically had his wife of 60 some odd years moved out, and while he can visit in the hospital, remember that he or she has suffered a lot of trauma. They're know alone and because the focus is on his wife there's a feeling of abandonment and probably some other things.

I had some scary moments with my Dad because I was really angry with him over the last few weeks of this thing, and I was the only kid that was talking to him, and I was pretty upset with his reactions and behavior and had suffered some real anxiety issues. First of all for yourself, if you need it there is the non emergency helpline and there are resources that you can go to for help with your trauma.

But my Dad started sending out these crazy emails and not answering his phone and it lead to me calling in wellness checks, as well I found out later that my dad had literally attempted to hurt himself and I didn't know this.

So if you can, make sure that you communicate about what's going on, ensure that former care giver that yes you can visit his or her spouse. But because what they're going through is not unlike the steps of grief management, and if you can do it, spend some time, plan some activities (My dad was losing weight and eating like crap, so I had to teach him to basically grocery shop), randomly call to check in, encourage him or her to call you if they're having negative thoughts.

If there's a relationship barrier, then at the very least, push them to call places like the non emergency help line so they can get in line to talk to a counselor or social worker, or call the Kirby Center etc. Make sure they know that there are resources out there.

At the end of the day I encourage my Dad that he couldn't live alone anymore. I found out that the facility that my mom is in has an Independent living wing, so I got him to take a tour of it, talked to him about the money side, told him that he would be close to mom and told him that there are lots of people there to help him, and lots of people his own age to play with.

So I was so happy that I got him to sign all the paper work and agreements last night with a move in at the end of February.

For me, I've started getting counseling, Ive been dealing with a lot of stuff for a lot of years, including problems with my family relationships that I had buried instead of addressing for a long time. Mainly because I thought I was tough enough to handle it myself.

I wasn't, when your sitting at home by yourself thinking that your better off dead then continuing to go through pain, its time to have an oh wow moment. Find a way in the midst of all of the crap and pain, and anxiety and fear to make sure that your mental state is taken care of.

If anyone has questions, feel free to hit me up I don't mind.
this isn't an end all and be all bible of dealing with Dementia in a family member.

If anyone wants to add in thoughts or tricks, because they're going through this it might help anyone that is going through or is going to go through this really ####ty difficult thing.
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Old 01-13-2022, 01:54 PM   #2
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I don't really have much to say other than thanks for posting that.
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Old 01-13-2022, 02:06 PM   #3
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Agree with Photon bud, well said!

I too have dealt with these demons and am available anytime, you have my number.
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Old 01-13-2022, 02:09 PM   #4
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Hi Cap, thanks for posting this and it does provide a sobering tale about family bonds and the value in communicating and taking care of each other.

You're one of the most longest-serving and incredibly polite members on CP (something that seems to be getting rarer as the years go on), so please keep being yourself - it's a breath of fresh air. And please, use this board as an outlet, because this is a place to communicate and breathe with empathetic ears from a like-minded community.
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Old 01-13-2022, 02:40 PM   #5
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My Grandmother had dementia and I've dealt with this sort of thing with various clients over the years so I've got a lot of experience in this area as well.

That was an excellent post but I'm just going to haul out a snippet to really emphasize:

Quote:
Originally Posted by CaptainCrunch View Post
As well make sure that you have everything legally done, with us we took over the role of the primary care givers to make all decisions from my dad, so we had to review all of their power of attorney stuff, and all legal documents that have to do with their decisions and for example finances. Consult with a lawyer if you are freaked out they can help you navigate things.
This is CRITICALLY important!

And you have to have this done while your loved ones are still of Sound Mind.

I cannot emphasize this enough. If this condition is even potentially happening get the paperwork done. It is crucial.

I have had experience with people who did not get their documentation completed and it is not a process to go through that you would wish upon anyone.
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Old 01-13-2022, 02:54 PM   #6
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My mother was an RN at many long term care facilities, especially facilities that dealt with dementia and Alzheimer's. When her father started showing signs of Alzheimer's, it really affected her and she had to retire. Dementia in a loved one is incredibly emotionally taxing, even for those who have vast experience dealing with the disease.
Our thoughts are with you. It sounds like you are handling it as well as possible, and accessing resources available to assist you. Thank you for posting this, and I think I am not the only one who would encourage you to share more of your journey as you feel ready to (or feel the need to.)
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Old 01-13-2022, 02:58 PM   #7
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I am by no means an expert, but like others have had family members suffer with dementia, and thus have studied the subject a fair bit. One interesting bit I learned was, it is not your responsibility to try and pull a person with dementia into your world, it is your responsibility to meet them in theirs (legal and personal safety aside). I found it really helped our visits because I wasn't trying to correct them or pull them into reality, instead we just had a nice visit about what ever was on their mind.
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Old 01-13-2022, 03:35 PM   #8
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One thing that helps with my mom when I visit is to frame things like stories. So a particularly memorable thing from her past, I tell it like a story instead of hey do you remember.


Make it entertaining and light.
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Old 01-13-2022, 04:18 PM   #9
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my mom had alzhiemers/dementia - it sucks. i would go to visit her and she would look at me and i thought she recognized me - but then nothing. my mom lived in assisted living places for almost 8 years - with the last 6 at behtany care in the kensington area.

the care there seemed fine. my sister visited mroe than i did and she never expressed any concerns - other than some of the clothes she brought for my mom would go missing. We meet annaully with the care team, and there did not seem to be a huge amount of staff turnover.

as mentioned above, make sure you have all the powers of attorney, end of life directives etc all sorted out.

all i know is that if i am ever diagnosed with this i want to go with an assisted end of life as you are not really living and it is expensive being in LTC and i would rather my estate have that money.

as humans, especially children, i am not sure we are wired to take care of aging parents and when you have to provide support for dementia you are dealing with a toddler again. And there is little break for the care giver.
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Old 01-13-2022, 04:25 PM   #10
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Thanks, Cap. With my dad having suffered what we believe to be a mini stroke, and losing basically all of his short term memory, we've been thinking about what the future holds with my parents.

My wife and I just updated our will, and we've also completed a Personal Directive and Power of Attorney. We'll obviously be chatting with my parents about these too. In the meantime, are there any other legal things we should try to take care of while we are healthy to help ease the burden on our children/caregivers later on down the road.
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Old 01-13-2022, 04:42 PM   #11
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Quote:
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Thanks, Cap. With my dad having suffered what we believe to be a mini stroke, and losing basically all of his short term memory, we've been thinking about what the future holds with my parents.

My wife and I just updated our will, and we've also completed a Personal Directive and Power of Attorney. We'll obviously be chatting with my parents about these too. In the meantime, are there any other legal things we should try to take care of while we are healthy to help ease the burden on our children/caregivers later on down the road.

The power of attorney and personal directives are huge. With my Dad not being able to be Mom's personal care giver we had to do renunciations on the ones that listed him as primary care giver.


The financial side of things is difficult. My Dad and Mom went to the bank a few years ago because my mom was starting to show so my Dad took over their finances, and the bank made him sign sign a power of attorney over her affairs. This is a pain to untangle so that us kids can access my mom's finances.



I've got my Sister working through this as she was a lawyer so she can coordinate with our lawyer.


Other then that it sounds like you've done the right things, but I can't emphasize enough what Locke said. Have that conversation with your parents or family members now, because if a family member has functional issues and you don't have the documentation taken care of it can be painful and expensive to untangle it all.
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Old 01-13-2022, 04:42 PM   #12
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Wow CC, thank you for posting this, the timing for me is on point, and I am choking back tears. I have been an angry emotional mess for weeks.

The similarities between your experiences and what my family is experiencing right now is overwhelming, and I think you are handling it better than I.

My Mom will be 69 in April. She has always had a bit of a ditsy blonde side to her, but has been a warm hearted matriarch who loves her grandchildren to death, and her favorite past time has a
been pulling anybody who dared on tubes behind her boat on Kootenay Lake. We lovingly called her 'The Tubinator'.

The past year or so, my siblings and I have noticed more forgetfulness, more repetive questions, more confusion. Mom has other conditions that seem to steer one towards Dementia further. She suffers from paralysing depression that keeps her in bed all day. She has severe insomnia and is on Ambien (at 4 times the recommended dosage for a person her age) as well as another med that I can't recall, but has some scary side effects like sleep walking, sleep eating, etc. She has sleep apnea, and has also been over weight most of her life. All of these contribute toward late onset Alzheimer's apparently.

During a sleep walking episode, she fell down the stairs at their Kootenay Lake cabin, which is inaccessible to emergency responders, it's beyond remote. Her husband found her bleeding and unconscious, for who knows how long. He took her to Creston himself, then onto Cranbrook (no ambulances available) for a head CT. Confirmed a severe concussion and brain bleed.

This magnified the symptoms that were already there 10 fold. It has been 3 months since the fall, and there is little improvement. She confuses timing of events, confuses pics of people. She thought a picture my daughter posted of my grandson was me. She thought a picture of my niece was herself. She is overwhelmed at normal tasks, can't pack a suitcase, etc. She didn't take her boat out once last season, this was before the fall.

My siblings and I made the decision to approach my stepdad and my mom, and get some cognitive testing done, and urge her to see an internal medicine specialist. We were told an internalist could begin deciphering what is due to head injury, the meds, the depression, the dementia.

My step dad, when not around my mom seems willing to do anything needed to get her help, but when push comes to shove, mom wears the pants, and he backs down. He has made comments to my younger sister (his daughter) that he has been reduced to being a full time caregiver.

I would have thought he would be thankful for the assistance we are trying to get her, but he undermines every move. He down plays symptoms to the doctor, and cancels appoinments when Mom throws fits from bed.

My stepdad's behavior has perplexed all of us, and I got very angry. I blasted both of them in a family chat when I heard they cancelled an appointment we had been waiting on for a month. We haven't spoken since. My mom is now pissed at the 'back channel' discussions, and her husband continues to enable her and is not qualified to oversee the weening off the sleep meds.

I see it as his decisions are directly effecting the amount of life she may have left, and the quality and lucidity of that time. I ask myself, who could live with themselves if they didn't try everything possible to slow the progression of her illness? I just get angrier as I see them squander time.

They are currently trying to get to Hawaii for month long trip. They have convinced themselves that some fun and sun will be the miracle that revives her. We are petrified at the notion of her snorkelling in her condition. Yesterday he tested positive for omicronn, so their trip, and any chance of resuming diagnosis and treatment gets delayed with it.

Needless to say, your post floored me today.

Meanwhile, my wife's parents, both 80+ have had surgeries through the holidays. Her Dad (open heart dual valve replacemt) is still in the hospital with very low BP and post op delirium. He loops the conversation every 10 minutes and has no idea why he can't go home, and gets himself terrified in the evenings. COVID protocols make my wife the only person who can visit, and we have her mom staying with us while she recovers from having her carotid reemed of plaque.

My wife and I are ready to get off this ride.

Sorry for the rant, but the pressure control valve is ready to blow.

I am in dire need of some counselling, I am literally getting consumed by anger and hopelessness.
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Old 01-13-2022, 04:45 PM   #13
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One of the most depressing things for me, I've visited the hospital a lot to see my Mom. There are lots of elderly people there suffering from a lot of different ailments, and you look at the visitors log and there are very few visitors.



I feel badly every time I see that.
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Old 01-13-2022, 04:53 PM   #14
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Molson you are going exactly through what we went through with my Dad. It causes major trauma and anger in you. Those actions by my Dad have lead to heart break and the split of our family. Remember though and I'm coming to realize that your Dad is facing daily trauma. Is probably exhausted and stressed, and like your mom with him, my Dad faced my Mom who always threatened to kill herself if he put her in a home.



One of the things that highly recommended if you can get your folks into their doctor (I sat in on one of those appointments because my Dad would downplay everything). Is to get a referral to a Geriatric Psychiatrist. He can evaluate your parents behavior and help with it, and prescribe drugs if needed to help with the bad emotional state.


Like I said, I'm not an expert on this, nobody can be in dealing with it, and emotionally its like going grand rapids boating in a hurricane during an earthquake by an errupting Volcano.


I didn't reach out for any kind of help (I'm an I've got this guy) til it was way to late and I literally made myself sick. the Non Emergency hotline is a good place to go. As well as support organizations for primary care givers which you can access for advice.



I literally hurt myself by thinking that tomorrow would be better and the next day and the next day. Reach out for professional advice and talk to your doctor about referring you to at least a Social Worker that can talk to you about navigating this thing.
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Old 01-13-2022, 04:58 PM   #15
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Oh and Molson, if you want to talk, vent compare notes, whatever let me know, I'd be more then happy to do that.
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Old 01-13-2022, 05:06 PM   #16
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@CC: many years ago, when I first met my wife (a registered social worker), her job at the time was "Family Support Coordinator" for the Alzheimer's Society of Calgary. Her role was literally to assist people like you: spouses, children, or other caregivers who have a loved one dealing with dementia and/or Alzheimer's. She left that job over 15 years ago, but I imagine the organization still has people doing the same work. If you're looking for professional assistance from people with actual expertise in this specific area, that's a good place to start.

https://www.alzheimercalgary.ca/find...-with-dementia
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Old 01-13-2022, 05:14 PM   #17
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One of the most depressing things for me, I've visited the hospital a lot to see my Mom. There are lots of elderly people there suffering from a lot of different ailments, and you look at the visitors log and there are very few visitors.

I feel badly every time I see that.
I have a friend with MS who's in an assisted care facility (he's maybe 60 now) and he always tells me about the people on his floor and who gets family visits and who doesn't. Same thing, it makes me feel so bad. I hope I can do better if/when the time comes.

One of the reasons I didn't hesitate to put a kitchen into our walkout basement and have my parents move in.
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Old 01-13-2022, 05:25 PM   #18
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My Grandma had the luckiest kind of dementia ever for her last couple of years. She went into this fairytale world where my dad was a judge in Australia (he was never a judge, never left North America, and had died like 15 years earlier). Her long-deceased husband was just at church, but would be back soon. Basically, anything bad that had ever happened was uno-reversoed to the point where all the negative stuff was best-case-scenario positive to her. She just cruised around smiling like the happiest person alive, which was also an uno-reverso of how she operated for the first 80-some years of her life.

She was a trip to visit, man. Maybe eight years ago I went to her old folks home to see her (in Saskatchewan). Some guy was doing a puppet show for the old people with a couple of marionettes. One of the marionettes was in blackface and I proceeded to watch the single most racist puppet show you could possibly imagine. It was straight-up the twilight zone. Just me and a bunch of dementia-riddled geriatrics howling at another geriatric making fun of other races. It was fataed up, man. Should I storm out? Should I stop the thing? Should I be a total wuss and just sit there gobsmacked (that's what I did)?
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Old 01-13-2022, 10:14 PM   #19
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Thanks all for the openness and sharing. Ya'll have no idea how this has helped. We too are dealing with progressive dementia in the family where, as pointed out above by several, the primary caregiver clearly is so fatigued they aren't fully functional themselves nor in the land of reality. The ill one should, at this point, be in LTC yet several of the family members still somehow think they'll magically "snap out of it".

The primary caregiver (the dementia persons spouse) is clearly not dealing with it well as things are slipping, weight is coming off, extreme fatigue, lack of engagement, EVERYONE is so worried abou the dementia person that the PC literally is left out of everything else and sits alone at home. it's so sad.

It's quite astounding how several of them have "normalized" the behaviors just so they can cope. Over a year ago we had a family meeting over this (last one I was invited to), where I said hey people ya'll need to think clearly about this... better to make a hard decision a little too soon, than not have a choice to make any decision at all because it's too late. It's super frustrating for me as I'm purposely not-included in conversations and decisions so they can continue living in the land of "oh they'll get well after XYZ" happens.

Anyways sounds like we all have similar yet varied experiences... sometimes I just wanna hop in my vehicle and drive away to the nearest tropical beach.
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Old 01-13-2022, 10:29 PM   #20
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Appreciate you sharing your experience with us.
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