(Step) Grandma with early alzheimers... Please help!

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djdaz_1985
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   Posted 9/25/2007 2:11 PM (GMT -6)   
Hi there everyone,
 
I thought i'd start this with a bit of history...
My stepdad's mother has recently been diagnosed with alzheimers disease and I am really confused as to what to expect. I have never had to deal with someone with alzheimers before on a personal level. I used to work in a nursing home when I was 16 (I am 22 now) but I was not really aware of what the individual residents suffered from. At the moment it is just her memory that seems to be affected (She can be violent sometimes as well). There has been some trouble following the death of her husband as to where she will live. She is being pulled in 2 directions... We would like her to live in a secure residential home near us in the south of England as we believe it is in her best interests, but she is being pulled towards Scotland by a family "friend" who we believe has a hidden agenda (Although we cannot prove anything.) She is currently in a care home in Scotland after a "holiday" ended in a UTI and she was temporarily sectioned under the mental health act for asessment.
 
What i'd like to know is what happens next! I know that nobody has a crystal ball, but what sort of environment is best for her? Her only living family is my step-dad so surely it makes sense for her to be where he can see her regularly, yes? What drugs are out there to help with alzheimers? How does the disease progress and how long does it take?
 
I would be grateful for any help people can give me.
 
Darren
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AlwaysRosie
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   Posted 9/25/2007 6:51 PM (GMT -6)   
Hi Darren . . . bless you for caring so much about your stepdad's mother. It does sound like a quandry . . . but who would be visiting her if the friend took her away? and how often would she have company? Her best scenario in a NH is if she has very frequent guests. It somehow makes the staff more accountable for day to day good care. Even a hospital visit is best with frequent visitors.

What can you expect? Each Alz patient is SO different. Many will function quite well for a long time. There are some who post here who have had Alz for a long time. I have heard that once the disease is active, the average life is about 10 years. My dad died in January after less than 10 years of diagnosed Alz. He would have periods of many months where he didn't lose any ground, and then . . . whoops!! . . . he'd really slide backward. I'm sorry there's no real time-line . . . but I can say that he became quite lost, mentally, before he started losing continence. He didn't seem to understand that he had lost control of his bowels and bladder, but it was still so hard to see. He was also very unwilling to cooperate with normal toileting and changing so we had to find lots of ways to encourage him to cooperate.

Hopefully some of the others will know more about the meds. Dad took Aricept for a couple years and then Nemanda. Mom also gave him Ginko Biloba which she said got him out of a sleeping funk.

I hope you get some responses from some of the others here.

Welcome to the forum and God bless you for taking an interest in your Step-grandmother. Your involvement will be a huge blessing to her.

In His Grip

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djdaz_1985
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   Posted Yesterday 6:05 AM (GMT -6)   

Hi Rosie,

Thank you for taking the time to respond to me. It seems kinna strange asking for help rather than giving it for a change! If her "friend" was to take her in Scotland she would get next to no visitors. He is the only one up there reallwho would visit and since he runs a busy farm, I doubt he would manage more than once every couple of weeks. If she was to come to us we would be able to visit 5-6 times a week. (Assuming thats what is in her best interest).

As for the timeline, I am glad that the average is 10 years. I understand that averages mean that people live longer and shorter than the average but I was thinking around the 3-5 years mark so I am relieved about that. I know everyone is different but (Generally) is there a longish period of time between where she is now (Memory loss) and her losing other mental functions such as speech?

I have heard of Aricept. It was licenced not long ago here in the UK. Her meds have not been sorted out yet, but I want to know if there is anything that I should be on the lookout for (I.e. anything that is not very good or Something that is really helpful). Also any other natural remedies that may help? Can anyone help me?

Thanks in advance,

Darren

 


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AlwaysRosie
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   Posted Yesterday 11:25 AM (GMT -6)   
Hi Darren . . . You are very welcome!! My dad actually functioned as a city Service Director for about a year after we all KNEW that he had Alz. His darned doctor would NOT acknowledge it and delayed care for about 2 years. After he retired he was able to function on his own (driving and being home alone while mom ran errands etc.) for another couple years as I remember. Taking away the car keys was the most difficult step as Dad was actually a pilot, race car driver, previously a police officer for many years, etc.). We started "visiting" with Dad while mom went to run errands when he could not stand to be left home and he didn't want to go with her. From there it evolved to him actually needing to have 24/7 care. Each step unfolded bit by bit and we all adjusted to the new agenda. There was no way to foretell how long each milestone would last before he would begin another downward spiral. But the spirals would always bring him down with a tug as opposed to gradually eroding things. I know how desperately you want to be prepared for things, but things really do unfold as they will. God gave each family member a day-by-day Grace to manage each step. We never had enough Grace for tomorrow, but we always had just what we needed to get through today. If a little encouragement could help, that's my little montra for you.

From all you've said, I would join my voice with the relatives who want to keep her in the UK . . . but only if you are committed to visit her. The only way for me to consistently do that, was to say to everyone in my life . . ."Monday, Wednesday and Saturday are reserved for my Mom and Dad" and I didn't plan anything else on those days so that I could do this important thing of being their for my parents. You are a peach of a grandchild if you are able to set aside a day a week to visit your Grandmother . . . whether she can show appreciation or not, it will be a huge blessing to her (and it will improve the way the Nursing Home cares for her because they will know you are coming and will see evidence of any lack of care). I would also befriend the staff at the NH and bring them little treats now and then. Appreciation for their care will beget more care. . . and everyone likes to be appreciated.

As far as what can help . . . I don't know much about natural remedies . . . someone talked Mom into buying $40/bottle Mangostiene Juice which caused no improvement in ANY of the 3 people in the family who took it religiously for a couple months. As I said before, Mom thought the Ginko Biloba helped Dad's energy level, but make sure you list it with her current meds for ALL her docs.

The best medicine I saw was planning activities with Dad. You can take your Gramma for a walk, take her to the park or to go feed the pigeons or the geese . . . take her to watch children play at a playground . . . put together small puzzles at the Nursing Home . . . play with play-doh or clay . . . draw . . . paint . . . any activity engages the brain and helps to delay the atrophy of the brain. Most of all, your presence WILL be a blessing, even when you think she doesn't appreciate it. Dad loved to listen to music and would gladly dance even when he could no longer form an intelligent sentence. Amazingly, he could also show me around on a Map of the World even when he could no longer recognize family members and grandkids. They ALWAYS love what they've always loved . . . so tune in on that early. Oh . . when Dad was really fading, he still enjoyed playing with a balloon. After he could no longer enjoy crafts, or a visit to a golf course . . . I would keep a couple balloons my pocket and I'd blow one up and tie it off and bounce it up a couple times and then send it his way . . . he would act like he didn't want to play, but he could never resist sending it back forth . . . you'll find your own fun activities, but you may have to try several things to find one that's fun for her.

Then . . . make sure you come back here and post your successes. Lots of people read here, but they don't post and your successes may help them with their loved ones.

I know Lyn will be along to welcome you too!! Keep us posted Darren!!

Blessings!

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Post Edited (AlwaysRosie) : 9/26/2007 1:01:15 PM (GMT-6)


djdaz_1985
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   Posted Yesterday 1:43 PM (GMT -6)   

Hi Rosie,

Just clear up a little confusion... Scotland is part of the UK, as is England, Wales and Northern Ireland. She is currently in Scotland but we want her to be in England.

For my step-dad, mum and sister it would not be a problem. They live in Gosport where the NH is and visiting is not an issue. For me, its slightly more complicated than that. I am a university student studying in Wales, so I am only in Gosport for 3 weeks at christmas, 3 weeks at easter and 14 weeks in the summer. I would not be able to visit on a regular basis throughout the year and I dont want to confuse her anymore by visiting at Christmas, and then disappearing until easter. Is it better for me to stay away? Is it going to be too confusing for her? I would love to get to know her, but not if it is going to be detremental for her. I will certainly keep people posted of her developments and successes. As you say, it might provide a ray of light for other people as well as giving me a chance to get things off my chest and talk to someone!

All the Best

Darren 


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AlwaysRosie
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   Posted Yesterday 2:08 PM (GMT -6)   
Hi Darren . . . thanks for the geography lesson . . . I knew that all were part of the UK, but tend to think of the UK as England. . . your explanation is very helpful.

Never allow a bit of doubt to stop you from slipping in for a visit. We visit when we can and all our worries about recognition fall away when we arrive. You could visit every day and she may not recognize you sometimes . . . although I was blessed to have Dad light-up most days that I came. He actually enjoyed even strangers . . . he seemed to connect more through their willing smile than any family connection or friendship. So don't be shy of visiting at any opportunity. You will bless her even because the Nursing Home will never know when you might show up and they'll need to make sure she is always ready for a last minute visitor.

I hope things work out well for you and your Gramma . . . as I said before it is refreshing and a blessing to see a Grandson who cares enough to seek help for his Gramma. You ARE a blessing to her. . . even when you don't feel like you are.

Blessings!

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djdaz_1985
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   Posted Yesterday 4:02 PM (GMT -6)   
Thanks for your encouragement. I will let you know how things progess with her and if she is in England when I return home at Christmas, I will definately go and see her.

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Howlyncat
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   Posted Today 5:24 PM (GMT -6)   
Darren,,,,
Sorry so long to respond my friend
Have been rather busy doing things with my Dad who also suffers from this horrid DD
My mom passed away March 20 2005 from co/ of and the AD........

There is so many things out there to try to help with the slowing of this DD that it is a great idea to have a neuro assess and then decide with all family or with family that will get together on her Treatment and all docs....what is next for her and for you's all and what meds might be the best to try
I believe Aricept is a great one as well as there is Nemanda as Rosie said

Once she is in a permanent place she will take some time to calm down and get adjusted to her new suroundings and her new routine ... and Rosie is right VISIT as much as you humanly are able ...you are doing alot and have alot on your plate BUT...she will love and enjoy those visits and YOU will have memories that will never be able to be taken away by anyone........... .some would say she may not realize that you are who you are or even there.....IMHO I truly believe that somewhere deep inside THEY know and feel your presence and your love and caring ..........
They are able to feel the vibes if many of the members are disagreeng IMO and will react to that either by totally withdrawing or being combative with some ppl in the NH ( staff and residents) as well as family.......

Rosie and I as well as some others did a thread a many moons ago about things to do with them and keep the memories going I will bring it up for you and hopefully it may help some family members as well as give you some ideas for Christmas or other times when you can visit

DO not feel guilty ....there is another thread on emotions ppl may go thru also will bumpo that one for you and your family

BE proud that you are stepping up as a man and asking questions to help your loved one

Sometimes you HAVE to go to their world my friend and YS it can be hard but it is needed.......for them .....

I am so pleased and not at all surprised that you are here for your step grammy and wanting support ideas and input
You are truly an asset to HW and I know that I would ( as would others) love to have you in this " family" as well ..........

As Rosie said we are always here for one another thru the good the bad and the really bad and we look forward to you being here with us my friend......

I am sorry for the reasons as I know from experience what this DD does to many ppl families and of course the ones stricken with it .....they are lost scared and sometimes feel so isolated and alone .......
That I believe is this disease as well .....so many faucets to this Alheimers it is unbelievable at times ...just when you THINK you have a handle on things .....WHAM....something else hits .........

KNOW we are definitely here for you plz

STAY with us and read Padraigs thread the first one .......it will give you some insight as to what he has done for G Jean these last yrs and the reason I love him as my mentor and my friend .......

Be well and take care

TTY again soon .........LUVS

LYN
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djdaz_1985
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   Posted 9/28/2007 11:14 AM (GMT -6)   

Hi Lyn,

Thank you so much for your support and for sharing your story. As I think I have mentioned before, it is difficult for me when I am at University, but I speak to my mum on a regular basis to find out how she is doing. Currently, she is in Scotland and is due for re-assessment in 5 weeks time so we are hoping that she can come to stay with us then. I am so grateful that you have all welcomed me into your family and I will keep you posted.

Darren


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Howlyncat
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   Posted 9/29/2007 1:17 PM (GMT -6)   
Please DO keep us posted my friend.......YOU are part of this family ...............

Take care and I know you are not able to visit BUT at least you are getting reports from your mom..........

Luvs
LYN
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djdaz_1985
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   Posted 9/29/2007 4:12 PM (GMT -6)   

Hi Guys,

My folks have been on the phone to my step-grandma (Babs) and it would appear that she is not settling very well in the NH in Scotland. We didnt think she would anyway, but we are not sure if it is the AzD making her confused or if she really doesnt like it. I suppose if she is still like it in a few weeks time we will know that she isnt happy there. Apparently the staff at the NH say that Babs comes to the office when the phone rings as if she is expecting my mum & step-dad to be on the other end. So she has at least got into her head that we ring regularly. Thats got to be a good sign right? Nothing more to the story really other than she has good days and bad days like so many others do. I doubt much will change in the next 5 weeks or so until we finally decide where she is going to live.

Thanks for your on-going support

Darren


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SnowyLynne
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   Posted 9/29/2007 5:52 PM (GMT -6)   
Darren who has power of attorney over her? The family should step in & take over NOT the friend.It does sound like she has an agenda...........
SnowyLynne


djdaz_1985
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   Posted 9/30/2007 7:46 AM (GMT -6)   
I believe the power of attorney is with the solicitors that her husband appointed before he died. After much fighting, Dumfries (A place in Scotland) now have guardianship but not the power of attorney. My step-dad is the only living member of family, but we were not originally allowed to step in. This is why we have been fighting to have some control. We believe that it should be the family that makes the decisions (Or at least has a say in it.) We are getting there slowly though!

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Howlyncat
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   Posted 9/30/2007 1:19 PM (GMT -6)   
I am truly glad Snowy asked the question.........

YES I believe the Family needs and should have say in what happens with her .........

Darren is she able to get a phone in her room for incoming calls only ??

That may make her feel a bit better IMHO..................yes it coould be taken a a good sign she is going to nurses station when phone rings BUT on the other hand it may be she is waiting for the calls to come ya know 'and goes down as soon as phone rings and if not for or about her it could lead to some depression ............Just a thought my friend

REMEMBER you are family here and we want to know what you and your family are going thru and try to help you out as much as possible ...........

Take care and know you are not alone ............LUVS...........LYN

Hopefully I am making some sense here........
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djdaz_1985
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   Posted 10/2/2007 4:33 AM (GMT -6)   

Hi Lyn,

I totally understand about the depression thing... that was the first thing that I thought about when I heard that she was doing that. Because not every phone call is going to be for her. Although my mum and step-dad do phone her every night. I never thought about having a phone in her room though! Thats a good thought! I am phoning my mum tonight anyway so I will ask her about that. Other than that, there is no change.

Im so glad I have you guys. Your support means the world to me
 
Darren
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AlwaysRosie
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   Posted 10/2/2007 9:09 AM (GMT -6)   
Great idea about the phone Lynn and Darren . . . .I never even thought of it because every hospital room I've ever visited has a telephone . . . it is just part of the health system here. Great thought!

Glad you are hanging in there Darren!!

Blessings!

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Psalms 139

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Howlyncat
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   Posted 10/2/2007 12:19 PM (GMT -6)   
I am really happy you will be checking into a phone for her ......I believe it may calm her down even if just a bit .......every bit does help ........

Yes keep us posted my friend ..........
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djdaz_1985
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   Posted 10/27/2007 8:55 AM (GMT -6)   

Just an update for everyone,

Babs has settled well in Scotland and as a result, we have deceided not to move her from where she is as we think it may confuse her even more. Although it means we will only be able to physically see her once or twice a year, we can still phone her whenever we like. As for having a phone in her room, I dont think the home would allow that even though I dont see the harm. Perhaps the cable would be a trip hazard?

Thanks for all your support

Darren


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SnowyLynne
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   Posted 10/27/2007 11:08 AM (GMT -6)   
Darren I was diagnosed very early Alzheimer's 10 yrs ago but last Dec.was rediagnosed with Vascular dementia.I was on aricept for 4 yrs,til it quit working & I've been on razadyne since.....
I tried Namenda but I can't take it.............
I still do pretty much what I want when I want but I do have days when i'm quite confused.Luckily I have a great hubby who takes up the slack when i need it......
Most all with dementia take an antidepressant to stave off depression.
SnowyLynne


Howlyncat
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   Posted 10/27/2007 2:54 PM (GMT -6)   
Darren

I do agree that if your Babs is settling in she should not be moved from there........yes it would cause IMHO more depression and confusion........

I am at a loss as to why the NH would not allow a phone for incoming calls though if it is being paid for and Babs is not able to make outgoing calls .......seems top me it would be beneficial for her ..... and I know here in Ontario they allow it but I guess all NH are different in so their ways .....

Seeing her Biyearly is better than NOT seeing her at all

I cannot tell you the sadness and heartbreak I felt when the AD person was placed in a home where I worked and the one I owned that was TOTALLY abandoned by all family ,friends ect.........
they do have their feelings still and they sometimes may not know you or others ( example) but they DO still need the visits and company

It is quite evident that you and your family do so care about Babs and love her to pieces

I am so pleased that you are sharing and getting the support of this family on this forum .......

Plz do keep us posted .......

Luvs
LYN
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djdaz_1985
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   Posted 10/28/2007 8:39 AM (GMT -6)   

Thanks for your support guys. The other advantage to leaving her in Scotland is that her care is partly paid for by the state which would leave more money for her to do other things. If she was to move over the border into England, she would have to be completely self-funding and that would be a real drain. Especially if she has another 20 years in her.

Once again, thank you for all your support

Darren


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Howlyncat
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   Posted 10/28/2007 1:43 PM (GMT -6)   
Not a problem Darren..
we are here for you , your Babs and family anytime.......

Luvs
LYN
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djdaz_1985
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   Posted 10/30/2007 8:49 AM (GMT -6)   
Thanks Lyn. You really are very good to me.

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   Posted 10/31/2007 2:40 PM (GMT -6)   
Take care n post when u need to talk or ask anything my friend k

Luvs
Lyn
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Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/19/2007 12:48 PM (GMT -6)   
Hey Darren

Just checking in to see how your Babs is doing ...........

Hoping all is going well ...............

Luvs
LYN
    Contribute today to support Healing Well Forums...Donate @
                          http://www.healingwell.com/donate/
 
  CO-Moderator@ Crohns
       Anxiety/Panic
  Moderator@ Alzheimer's
DX @ Crohns, Pyoderma Gangrenosum ,Anxiety /Panic
 
        We Have Anxiety.....Anxiety Does NOT have Us
 
      
 
 
                            

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