Dealing with Dementia

[CUSO]

I recently learned that my favourite aunt has dementia.

I know she has been forgetful, and she recently has gotten worse.

What can our family expect from this? Is it a slow process, or does it hit full blown?

She decided at easter to get up and try to leave and find "home" luckily we caught her before she disappeared

Any personal experience and info would be great, as I still am planning to see worse stuff.

Thanks in advance,


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[fnDan]

I assume that your Aunt has gone through the assessment provided by AHS. I believe it's the first step to get into the system. My wife's great aunt hid her struggles very well when she was living on her own. She developed some little tricks to deal with issues and remembering faces. We slowly realized she couldn't live on her own anymore. We would find food in her freezer that we were not sure how old it was but she had written herself notes saying it was good the last time she ate it. We moved her into a seniors living complex. I think it helped a lot that my wife and her great aunt agreed on a power of attorney before any of this started. Living in the seniors place lasted almost 2 years I think. We had to move her to a secure home a few weeks ago. It's very hard on my wife now that there are moments when her aunt doesn't recognize her anymore. It seemed like a very steady decline to me. Phone calls were almost everyday, then once or twice a week and now she doesn't think to call anyone. She has no recollection of her deceased husband. She has absolutely no idea who I am and it's usually better if I don't visit in order to avoid added confusion and stress for her.
Hopefully you have someone in the family that can work with Alberta Health Services to get your Aunt into a home that suits her and your family. They try and make arrangements to keep the residence within 50 km's of the primary caregiver, family member or the person with power of attorney. My wife was asked to choose 3 places she would prefer and they would try and work from that list. A room became available outside the 50 km's but given her Aunts decline, we had to take it. For her safety. Now that she's in the new place, it seems nice and we probably won't move her since the last move was very stressful for her.

 

[towerrigger]

Just watched this a segment on 16x9 about dementia. Personally don't have any family with it. Can see myself developing it down the road after all the concussions.
http://globalnews.ca/news/1290617/d...ou-dawna-friesen-shares-her-familys-struggle/

 

[TylerG]

I watched my Grandmother with dementia, it was a slow onset and I actually had to stop going to see her as it was too hard for me to see her in the state she was in.

My mother went religiously every 2nd Sunday to see her as they live West of Stony and Grandma was in Millwoods. My dad would go with her most times and Grandma would remember dad but not mom at times (moms mom).

Grandma passed last year peacefully in her sleep, but dementia was a horrible disease to watch her deal with.

Be very patient with your wife & her aunt, its not going to be easy but she's going to need your support.

 

[arff]

The only experience I have with dealing dementia is patient care. We see people living on there own in apartment and eventually into assisted living. It is important to find a place that cares for them 24/7. You don't want family members lost or hurt.

The link I posted is a place in Leduc. It has all levels from living 100% on your own to 100% percent assisted living.
You could give this place a call for some advise if you wanted.


Be patient your family will need your support.

 

[Lightningmike]

I am just learning more about this disease as my mother was diagnosed with it within the last year. She isnt too bad yet but I know it is really taking a toll on my dad.

My brother and I have recently gotten more involved with helping him because we can see the steess it is putting on him.

I have lots to learn but realise that anyone that deals with it needs a good support system.

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[sirkdev]

Not to make light of a sad situation but I'm pretty sure my boss has dementia and refuses to admit it.....

 

[raceu4it]

all the above is true and very painstaking as it takes it's toll on the family members. my wife's mother was in a supervised care for 8 years before she passed and her husband is in there fading away meanwhile the estate gets eaten up by the services. i know if i were diagnosed i'd go like a first nation elder at find a nice tree to sit back an relax on a sunny cold day rather than being a burden to the family which isn't fair in todays health system. just my 2 cents.

 

[whoDEANie]

My uncle started showing signs of dementia which we first shrugged off as exhaustion and maybe a little depression. After about 6 months it was apparent that he was developing a serious problem. At that point though, he still appeared completely functional - the truth is that he wasn't as functional as we let ourselves believe. He could be completely lucid one moment and totally out of it the next, which meant that even though he may have been OK most of the time, when he wasn't OK and could be posing a serious danger to himself or others (like while driving).
I think everybody degrades at their own rate. There are factors that can contribute. I hear that heavy use of sleeping medication can accelerate dementia as can depression and a lack of stimulation. In his case, he went from a retired doctor and capable gearhead to a guy who can't figure out if it is diesel, gas, or paint thinner that goes in the lawn mower and arbitrarily decides to crap on the kitchen floor from time to time - all in less than 2 years time from the very first minor symptoms.

The lessons my family took away from it were:
1. Always keep an eye on them. It is easy to give them too much credit, but they now need to be watched even closer than a child.
2. Keep them stimulated. It doesn't seem like much harm to let them hibernate in front of the TV where they not hurting anything, but all that's doing is accelerating their condition.
3. Watch those drugs! So many doctors write prescriptions faster than I can spool out toilette paper. There are a number of drugs that are speculated to increase a person's chances of developing dementia.

 

[Murminator]

My wifes has 2 aunts is going through the same thing and from only seeing them every couple months they went downhill in a hurry from living at home to be put in a home within a year. The 1st thing you think of how they forget spouses or children but that is the least of their problems. And they need to be watched 24hrs a day I know it is hard to "warehouse" them away in a home but it is the best for them. But they forgot how/why to go to the bathroom or don't know what or when to eat she would eat kleenex's or drink dish soap or she would turn on the stove or oven and touch the burners or racks. Or forget how to walk down steps it is truly a cruel disease

 

[somethingnuw]

we are currently dealing with grandma.... she's good... she rememeber me but not my kids... she just doesn't remember yesterday... she has lost her knowledge of what a toilet is... so she's in diapers... its sad cause she was a very proud women and know tries to hide the fact that has a dirty diaper... she lives at home with my mom and dad who have a nurse come in to help mom out with the care giver part... old italians can't put eachother in a home but man is it hard on the family... my mom who is retired just can't do anything but stay home and look after her mom... if she leaves over night... grandma becomes a major B****h to her caregivers and they quite...

one word of advise when the diagonosis is new have someone get power of attourny... if she has a house... and she still is mentally able go see an accountant and find a way to have it gifted over so you don't have to pay the death tax 50% down the road... we are gonna get burnt... sad i helped build her house with my grandpa who was stone mason... now when she passes no one will be able to afford to keep it...

 

[JMCX]

60 Minutes tonight has an interesting segment on people over 90.

 

[Lightningmike]

So my dad just sent in papers for getting on the waiting list for a long term care facility for my mom on Nov 18. He procrastinated as did we all. We were told it could be anywhere from 6 months to a year until a bed came available. Surprise call today at noon saying they found a place for her. Had to decide by 4:00. Some 6 months. It is way harder than I thought it would be to decide to send her in there. Just before Christmas makes it harder.

How do you draw the line between their safety and quality and happiness of life being at home where they have been all their life.

We toured the facility today and it is an old place. Made me think that there is no way she is at this stage, but then you wonder about their safety with winter being here, or just things they may do around the house to harm themselves. They are building a replacement facility but won't be ready till spring. It will be much nicer.

My Dad decided to hold off but is second guessing himself as are we all. If we refuse they pull her name right out of the system and we have to re apply and have another assessment done. What if she gets worse fast and it takes much longer to find a spot the next time. One never knows if you will make the right decision or not.

Sorry to babble, just confused and stressed.


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[Old-Soul]

Stay strong guys, it's a horrible situation for anyone to be subjected too.

My Great Aunt had a stroke almost ten years ago and went from an independent firecracker (single her whole life. Fantastic in the kitchen, artist with a brush or a whittle knife with a memory sharp as a tack), to a shadow of her former self in less than a year. She has been in a home the past 8 years (she's in her late 80's as it is) and rarely if ever recognizes my Grandmother or my parents. It's been hard on them as they were all very close and to see anyone you're that attached too change so drastically is not easy.

I hope you guys have strong, understanding families. While she had no children of her own she has near a dozen nieces or nephews all with their own spouses and with the exception of my parents, my aunt and one of their cousins nobody in that family has been much help at all. It's really a lot of work for my parents, grandma and aunt. Whenever I hear mom's cousins talk about my great aunt it's hard for me to keep my mouth shut.

 

[finndoo]

So my dad just sent in papers for getting on the waiting list for a long term care facility for my mom on Nov 18. He procrastinated as did we all. We were told it could be anywhere from 6 months to a year until a bed came available. Surprise call today at noon saying they found a place for her. Had to decide by 4:00. Some 6 months. It is way harder than I thought it would be to decide to send her in there. Just before Christmas makes it harder.

How do you draw the line between their safety and quality and happiness of life being at home where they have been all their life.

We toured the facility today and it is an old place. Made me think that there is no way she is at this stage, but then you wonder about their safety with winter being here, or just things they may do around the house to harm themselves. They are building a replacement facility but won't be ready till spring. It will be much nicer.

My Dad decided to hold off but is second guessing himself as are we all. If we refuse they pull her name right out of the system and we have to re apply and have another assessment done. What if she gets worse fast and it takes much longer to find a spot the next time. One never knows if you will make the right decision or not.

Sorry to babble, just confused and stressed.


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It can be a very hard decision to make. It is not uncommon for a spouse to feel guilt about finding a care home or facility for a loved one. I worked in an extended care facility for ten years and caring for someone with dementia can be an unimaginable amount of work. He must be very physically and emotionally tired from looking after her 24/7. Let your dad know that there are many caring people that work in these places and do their best to look after the people that live there. With other people doing the majority of the care for her he will be able to spend quality time with her and visit her whenever he likes, even spend the day out with her if that option is still suitable in this case. It would probably be a good idea for you to visit on a regular basis and be a part of any care plans and, meet the staff, stay involved. If you have any concerns express them to the RN in charge or the facility manager. As the disease progresses it can become more difficult to watch a loved ones cognitive and physical abilities decline, but do your best to support each other.

 

[Lightningmike]

Thanks folks. That is a good point about taking the stress away and being able to spend quality time with her. I know that would be much easier on my Dad. Mom is only 67 and I know dad has many regrets about not taking extra time to vacation or just enjoy their retirement. This is probably part of the reason it is so difficult for him.


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[aocbiz]

I feel for you and your family. Getting a safe and caring place for them that is close by can be difficult. The care facilities are full and the waiting list to get in is long. So when they offer you a spot and only give you the day to decide its because there are many more people waiting for a spot in the care facility if you don't take it.
We have had 2 family members go through this horrible disease and it is not nice as I am sure you are finding out.
Going to visit is hard in more ways than can be described, first you are trying to deal with what you and your family are going through but then you see all of the other patients in the care facility and the different levels of suffering they are going through its so sad.
Be strong for yourself and for your family and keep learning about the disease it will help you undertand as things progress.
Take care.

 

[scotts]

Thanks folks. That is a good point about taking the stress away and being able to spend quality time with her. I know that would be much easier on my Dad. Mom is only 67 and I know dad has many regrets about not taking extra time to vacation or just enjoy their retirement. This is probably part of the reason it is so difficult for him.


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Sorry to hear about your situation,
Have you looked at the extended care facility in Islay, as I see your from loyd, it might be a temporary option for you guys!
My mother suffers from Parkinson's and dementia and has been there for the last couple years. It seems to be an excellent facility and the people that work there are excellent!
they also have respite programs where the person can go stay there on a temporary basis to give the caregiver at home a break while the patient get accustomed to the facility!
its just a sad situation without a happy ending unfortunately, but all a person can do is take solice that your loved one is safe and cared for!

 

[fidorama]

Years ago I saw my grandfather go thru it. He ended up bouncing his way thru several retirement homes, seems non of them wanted to deal with someone in his condition. In the end ended up in Alberta Hospital, and let me tell ya, what a hell hole of a place that was... I felt so bad for him in there... There were other old f***ers who would beat him up! He sure never deserved that fate. I don't know if its genetic and my moms going to end up that way... sure hope not. I think she seems ok that way so far... But my dad on the other hand sometimes makes me wonder
,

 

[Lightningmike]

Sorry to hear about your situation,
Have you looked at the extended care facility in Islay, as I see your from loyd, it might be a temporary option for you guys!
My mother suffers from Parkinson's and dementia and has been there for the last couple years. It seems to be an excellent facility and the people that work there are excellent!
they also have respite programs where the person can go stay there on a temporary basis to give the caregiver at home a break while the patient get accustomed to the facility!
its just a sad situation without a happy ending unfortunately, but all a person can do is take solice that your loved one is safe and cared for!

I didnt realise there was a facility in islay. I would like to try a respite program to see how she adapts to that and to give my dad a break as well. He needs it. He called me one morning having chest pains at 5am. Took him to hospital and we spent 12 hours in emerg ward while they ran tests etc on him. All turned out to be ok but since then he has said several times that that was one of the most relaxing days he has had in awhile. No stress. I cant imagine what the 24/7 caregiver goes through.