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Old 02-04-2009, 07:27 AM   #1
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Looking For Advice Please

Hi, I am new here, and wanted to ask you guys a few questions.
My dad is 83yrs, was diagnosed with Vascula Dementia 2yrs ago after a stroke, but on reflection, I think he had it before then.
He recently came out of hospital after having to have a hip replacement because of a fall.
Now up till then, he went to the pub every night without fail. would stay in bed all day, just getting up to get ready for the pub. (I must state in all honesty, I thought he was an alcoholic, but he has never drank in his flat, or in the day.)
Since coming out of hospital though, he hasnt been to the pub, a neighbour goes round in the evening and takes 1 can of beer for him to drink.
He sleeps all day, getting up around 5 or 6pm if he is left.. He has a care package in place, but if they do manage to get him up, he sleeps on the settee.He now wants to sleep 24hrs a day. I have to beg him to get out of bed long enough to eat 3 meals a day.
Has no interest in the newspaper, television nor the current political situation or for conversation. No information I have found on Alzheimers or dementia mentions constant sleeping as a symptom. I dont know what stage dad is at, he has no short term memory,he still knows me, but after I have gone will say he hasnt seen me in ages. I have to constantly repeat myself. Any advice or tips , or anything really would be helpful
Thanks

 
Old 02-04-2009, 07:49 AM   #2
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Re: Looking For Advice Please

Looking-
Welcome to the group. I'm sorry that you had to find us. My father also had vascular dementia. He has been dead for a year. He died from an anuerism, so it wasn't the dementia that killed him, but I did watch it cause him to deteriorate.

The loss of the short term memory is extremely common and is a standard side effect of this type of dementia and also of Alzheimers. The fact that he says that he hasn't seen you is because he can't remember that you have been there. Not your fault. It's the cause of the disease. And the fact that he just had surgery and anesthesia probably made his condition worse. Any time that you have major surgery and are put to sleep and have demetia, the drugs they use cause a slippage in their memory banks. So you can usually count on them coming out of the sugery worse than when they went in. Hard news to hear I know.

The sleeping is also one of the side effects of the disease. Is your dad easily arosed> I mean can you get him up if you need to? My Mom who had alzheimers used to sleep alot, but we could get her up by just telling her we wanted her to get up...is it that way with your dad?

I take it that your father is living alone at this point. You said he had a care package in place. May I ask what that is? We don't have that in the states so I'm unsure of it. Is if food or people who come in to help or what? Do you think that it might be time for your father to be in AL or a NH? Is he on some type of medication that might be causing his excessive sleep patterns?

Another question for you. Do you have durable and medical POA for your father? I don't know how it works for you in England, but here it is needed for you to have any legal rights to speak with his doctors.

I am sure that others will chime in with suggestions. We're a welcoming group..and sorry that you needed to find us...

 
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Old 02-04-2009, 09:13 AM   #3
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Re: Looking For Advice Please

I would like to welcome you here also. So sorry you find yourself looking for answers. Because it means a loved one is slipping into this beast of a disease.

My Mom also had two hip replacements and a few years later a knee replacement. It was Moms knee replacement and then abdominal surgery 4 months later when we saw a rapid decline in her abilities to function on her own. She was in her middle to late 70's when the surgeries took place. It took awhile before we realized the decline was permanant. As ibake said "Hard news to hear". But its true. Her short term memory was and is very bad. We therfore moved her to an Assisted Living Facility for her safety and our peace of mind. She has her own place with her treasures around her. She is content and safe. Looked after very well and shes not alone. In the end we (sisters and I) had to do what we thought was best for all of us.

ibake has brought up some questions of importance. She, along with so many others helped me very much when I first came here. She thinks ahead. I needed help with everything. The ladies here can be a wonderful source of information. You came to the right place.

Again Welcome and come back. This place is my lifeline to sanity. People who understand..........they are a gift.
Love, Chris

 
Old 02-04-2009, 09:29 AM   #4
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Re: Looking For Advice Please

Hi, and thanks for your reply.
Yes, dad did get worse after going into hospital and having his op3 months ago, but mentally,he seems to be about the same as before he went in.

You ask, can we get dad up when we want him to, well the answer to that is No...I have just been upto see him, and he was still in bed again! I asked him to get up for his tea, but all I get is,I will soon, im tired, and then back off to sleep again.

Yes dad lives alone, the care package consists of carers going into him 4 times a day to make sure he ok, ie getting up (which he refusing to do) washed/ showered. Breakfast/ Dinner and Tea.
He has everything done for him now.
Dad pays for the help, but its through Social Services.
I used to do it all myself,with the help of my brother, but then May last year, my daughter was diagnosed with terminal Lung Cancer,and came back with my grandson to live with us, It got too much for me, and so dads care package was set up.
Sadly, my daughter died in November,I told social services that I didnt want to carry on being a carer, I just want to visit my dad.This hasnt gone to plan as yet. I still fetch his money, shopping, washing, make his tea,roll his cigarettes etc.

My dad is only on Paracetamol for pain in his hip, and multi vitamns, so cant be them thats making him sleep like he is doing.

I am able to speak with doctors about dad,he had to sign a letter giving his consent.
I know what you say about NH I just wanted to keep him at home for as long as i could.
How can he sleep for that long, Have also noticed this last week as well. you have to really listen to what he saying, as sometimes it dosnt seem to make sense?


Also, Thankyou to Chris for your reply, so glad I have you all. just wish I had done sooner
Thankyou love Helen

 
Old 02-04-2009, 10:36 AM   #5
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Re: Looking For Advice Please

Welcome to the board Helen. I to hate you needed to find us but glad you did. Much of what I read in your post reminds me of my Dad who also has Vascular Dementia. Yes, he sleeps a lot. He is in bed by 8 pm and may get up in time for his 11:30 am lunch. If he is not ready to get up he will wake up but tell you he is going back to sleep as your Dad does. Once up he snoozes in the chair most of the day.

Like you, he knows me when I am in front of him but as soon as I leave he forgets I was there. I have gone to the bathroom only to come out and him be delighted to see me because he has not seen me in ages. His current memory is non existant. We answer the same questions over and over again and have give up on explaining things to him. He hates to take a shower but once you put food in front of him he will eat, all of it. Then he walks away from the table and wants to know when he gets to eat.

The pain meds do have an effect on the amount of time they sleep and on their confusion level.

Dad remained at the stage your Dad is in for a long time. His dementia was not a steady progression like with ALZ but more a step down with each vascular or other health episode. Each hospitalization, medical episode, surgery caused a worsening of his dementia.

Be very aware of what is going on. Dad has started hallucinating, wandering, and becoming agitated after his last AFib episode. These episodes are intermittent with the sleeping episodes. The situation can change in an instant so be aware that you may have to change his care plan at any moment.

I am so sorry about your daughter. I could not imagine your pain and understand your desire not to be the caregiver again. I do hope you can find a suitable situation for your Dad that you will not have responsibility for his day to day care. You may want to consider placement for your Dad, if not now then in the future, but it serves you well to be prepared. We ended up moving Mom and Dad into assisted living with Mom was diagnosed with Alzheimer and was no longer capable of caring for Dad.

Sad to say this gets no better. It only progresses downware.

Again, welcome to the board. Glad you are with us and hope to hear from you again soon and frequently.

Love, deb

 
Old 02-04-2009, 10:56 AM   #6
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Re: Looking For Advice Please

Hi Deb,
Like your dad, mine hates having to shower, we have a male carer go in to do that for dad, as he cant do it alone.
Any ideas what stage my dad is at then?
I know whilst in hospital my dad was hallucinating, and getting agitated, but they put that down to the meds he was on at the time.
I just worry now, esp now he not going to the pub( its a little school thats been changed into a social club, right next door to him)
That is what sort of kept him going, if you know what I mean, it gave him a reason to get up, the other day,Mon, he didnt get up at all.
He just seems to be giving up?
Love Helen

 
Old 02-04-2009, 03:48 PM   #7
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Re: Looking For Advice Please

I am so sorry to hear about your daughter, Dear Helen. May God give you the strength to keep on going. I hope you can get full time care for your father. Are you now taking care of your grandchildren? What a terrible tragedy for them too.

My friend's sister now has Alzheimer's, as my Mom did. This lady sleeps all the time. You can hardly get her up to eat. She lives in assisted living but this is obviously not enough care ... she will have to be moved after only a few months. She also doesn't remember her sister or her children, nieces and nephews or grandchildren. She asks over and over again who they are.

My Mom also slept a lot during the final stage of her dementia. To me it means they do not have much more time left to live.

Love,

Martha

 
Old 02-04-2009, 04:20 PM   #8
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Re: Looking For Advice Please

Hello Helen...my welcome joins the others.

This is such a bumpy road, isn't it? Sounds like you've already almost reached your limit of heartache...so sorry about your losing your daughter.

I hope you have the chance to go back and re-read lots of the other posts here...many things that may be helpful have already been discussed.

When you mention how your Father seems to be...both inlaws also passed with Alzheimer's not long ago...their death certificates said...
" Failure to thrive; Alzheimer's". My own Mom is in the 10th year after diagnosis, and in this last stage...but part of her just keeps holding on...

So many of us here know exactly how you feel...and there are many shoulders offered. Hope to see you post again...you are not alone....Pam

 
Old 02-04-2009, 06:25 PM   #9
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Re: Looking For Advice Please

Helen,

My dear, my sympathy for the loss of your daughter. God never intended us to bury our children. Are you taking care of your grandchild now also?

Your father may be sleeping more because of the pain meds that he is on also. A common side effect of alot of pain meds is sleepyness. That combined with the dementia could be causing him to sleep even more than he was before. It could also be just that he is entering a later stage of the disease, and that he is getting older. all of these combined can have a cumulative effect on him I'm sorry to say.

He may be reaching the point where you might want to consider more support than you are already receiving for him. You have already had a difficult year in your family and caring for a dementia patient isn't the most easy thing to do.

You have my sympathy..and my prayers...

 
Old 02-04-2009, 08:26 PM   #10
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Re: Looking For Advice Please

Helen, if he has vascular dementia, does he also have any heart problems, poor circulation, high blood pressure? You did say he had a stroke. All of these are circulatory or vascular problems. As Dad's doctor explained to me, if there is limited circulation in his legs or his heart, then why not his brain. All of these vascular conditions make you tired and weak. So that may be part of the explination for the sleepyness. I would put stock in the pain meds contributing as well. Also it takes longer for them to recover from surgery. The combination of the surgery trauma, the anesthetic, the pain meds, and all he went through are probably the main cause made worse by the dementia and circulation issues.

I have never been able to peg Dad into a Level. Mom with her ALZ falls into a catagory much better than he does. Until his last AFib attack he was doing much more than he should have been. If you could talk him into the shower, he would do it himself. He would shave voluntarily. There were no toileting issues. He fed himself and his appetite was good. He just didn't have any short term memory and was the poster boy for sundowning.

I have watched his memory progress backwards. For years he talked a lot about his job, the national guard, and taking care of his family. Then he moved back to his military service. Now he is back to his young adult life when we were babies and there is also concern for his mother. At times he goes back into his teen year and talks about life on the farm. It is not as if they are memories but as if he is in that time again. I do listen to his ramblings now.... it's like a history lesson of the 30's and 40's.

The last two years he has been having hallucinations but they were not coupled with wandering or aggitation. They were easy to deal with. It has only been recently that he has started the agitation and wandering to fullfill the objective of the hallucinations. I am fairly certain it is a direct result of his vascular episode a few weeks ago.

So yes, Vascular Dementia is a little different from ALZ but the basics are the same. Quicker than we would like, they reach a point when they need full time care.

I do hope your Dad recovers as best he can from the surgery and finds his way back to a level close to where he was. Give him time to recover

Love, deb

 
Old 02-05-2009, 02:30 AM   #11
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Re: Looking For Advice Please

Hi Martha,and everyone thats replied to my post

I have my 13yr old grandson living with me at the moment( not sure if he going to stay with me, or go to his dad,)The youngest 11yrs wanted to live with his dad, and my daughters eldest is 19 and living in her own house with a baby.
Dale, the one thats living with me, is a bit of a handful, and pushing his luck.Im not sure if I have the energy to go through it again. I brought the eldest up from the age of 9, so she more like my daughter, anyway thats another story.lol.
I also have my own health problems( COPD) and rely on hubby to take me in the car to dads.

I will d*****atly be going back through the posts , there is so much info here,what a great place to come. I dont know weather it just my doctors, but we dont seem to get much information from them.

I get confused with the stages of dementia, isnt the last stage where he will mess the bed, and get agitated or violent? Dad isnt doing this, and really dont think I could cope at that time?

deb,

My dad lives in his teenager/young adult life, constantly going on about his dogs( from when he was a boy).
Whilst in hospital, he thought he was in the army barracks.

Dad hasnt been wondering as yet, do they all do it/ have I got that to come?

Can I ask what do you class as a vascular episode?. The reason I ask is dads doctors dont seem too concerned about it,dad at times will seem a little more confused,a bit red in the face, and very quiet. The doctors say, well yes he could have had a mini tia, and dont do anything.?

It gets so frustrating at times....

Love Helen

 
Old 02-05-2009, 05:10 AM   #12
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Re: Looking For Advice Please

Dear Helen,

First let me extend my heartfelt sympathies in the loss of your daughter. I can't imagine the sorrow of losing my daughter. I'm so sorry.


As far as stages of dementia, every patient is different. Mom is so much worse when she is sick or has been in the hospital. When she began having TIA's and problems with her heart she was put on blood thiners. When her face began to get red alot it meant her blood presure was getting too high and she was then put on medication. She now takes a host of meds to just keep her going. She does not wander as of yet. Thank God. If she does start this she cannot stay where she is because they are not equiipped to handle people who wander away. I don't think everyone wanders. Its very hard to determine "stages". Mom is different everyday. We explain this changing daily as "the light switch is on...........then its off". Just depends on the day.

As I have come to understand the last stages, it is described as a "failure to thrive". They are unable to swallow or won't swallow, can't walk and their bodies just shut down. My Grandma did this in the end. She had lost the ability to swallow, process sounds, she couldn't see or I guess understand what she was seeing so she kept her eyes closed. The only time she spoke was to cry for her Mom. She was very healthy physically. This last stage for Gram only lasted a few weeks. She was 97 and did not take any meds at all. Never, not one. But the ALZ took her.

Mom is not healthy at all. She has quite few serious conditions. My sisters and I pray that she does not live long enough to go through what we saw our Gram have to endure. So we wait and take care of her the best we can.

Oh my goodness, a teenager??? I'm not sure I could go through raising one again. LOL They are tough to deal with aren't they? I suppose I could do what I had to do if my grandson needed me but you've already been through so much. Bless your heart.

Not sure if I've helped you because each of our parents are so different in their declines. Keep coming back here. Its a place to get information or just talk to those who understand what your going through.

Love, Chris

 
Old 02-05-2009, 10:43 AM   #13
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Re: Looking For Advice Please

Helen, Chris is right, it is difficult at times to determine what state they fit in and I find it more difficult with Dad and his vascular dementia than with Mom and her ALZ. Dad can vary from hallucinating, wandering, incontinent, and unable to identifiy his girls to rather lucid and caring for himself in a matter of hours (with a long sleep period in between). Mom on the other hand is more consistent. Read the stages in the sticky post called "7 Stages of Alzheimer". Take an average of what he can and can not do. Then see if you can plug that into a stage. Many times they are between stages. Mom is a solid stage 5/6 now. Dad is a solid 6 headed to 7 rapidly. Each is very different and will show different manifestations of behaviors depending on what areas of the brain are the most affected.

Sorry to say there are many doctor's that don't have a clue about dementia. Dad's first doctor misdiagnosed him with ALZ when in fact he has vascular dementia. Mom's first doctor misdiagnosed her with depression. Mom's second doctor, even after an independent diagnosis by a research service, told her she could continue driving if she "paid more attention". ARG!! He was of the opinion that if you kept them active and at home that they would be fine. It was only after then moved to Assisted Living and came under the care of a geriatric specialist who is knowledgable of dementia that they got the care they needed.

A vascular episode is anything that would give you indication that there is a blood flow problem. TIA (Transischemic Attacks) or strokes, heart attacks or any irregular heart beat pattern, extremely high blood pressure or extremely low blood pressure all come under that label. Dad has leg pains because of his Peripheral Artery Disease (lack of blood flow in his legs) and his confusion is worse when his legs hurt. The red face could be a result of a vascular problem and that could be a key. Dad's last episode was Atrial Fib, and irregular heart beat. More than likely that shook loose small bits of plaque in his veins that caused disruption of the blood flow to the brain. Also there is the ability of the blood to carry oxygen. We do know that he has a critical drop in oxygen blood gas when he is active. This lask of oxygen also contributes to his confusion. There are so many things it could be but basically anything that restricts or disrupts the supply of blood/oxygen to the brain can cause a decline.

As far as the TIA. There is nothing they can do about that except give blood thinners. Is your Dad on any heart medication, blood thinners, blood pressure medication?

I could not imagine having a teenager again. I just got mine grown and independent (well almost). Bless you for taking on the challenge of your daughter's children.

Love, deb

 
Old 02-06-2009, 03:33 AM   #14
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Re: Looking For Advice Please

Hi Chris,and deb........

Dad isnt on any blood thinners, in fact they said at the hospital that his heart is as stong as an ox.

Your saying "the light switch is on...........then its off" discribes dad perfectly.

Looking through the sticky post "7 Stages of Alzheimer" I would say dad is stage 6, but whats the difference between that and the "Cognitive Decline"as dad is between
5 and 6 looking through those?
Am I right in saying the middle stage is the longest?

Thankyou all so much for your help, and Im sure I will be here often with more questions, or just to look through the posts

Love Helen

 
Old 02-06-2009, 08:06 AM   #15
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Re: Looking For Advice Please

In my Mom's case, the middle stage and the final stage were equally long, each around 2 years. I think it was in the early stages that I had the most heartache - nobody understood or accepted what was happening to Mom and I used all the wrong methods and all the wrong techniques in dealing with her, making it painful for both her and me (at that time I lived with her.)

The final stage was when she was wheelchair bound, incontinent, and losing memory for old times as well as new.

Then unable to chew, unable to swallow, unable to process food or medicine, and finally death.

Altogether the disease lasted 8 or maybe 9 years, from the first sign that 'something was not quite right' to her death.

Love,

Martha

Last edited by Martha H; 02-06-2009 at 08:07 AM.

 
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