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My first post-really need a caregiver group
65321
Posted: Tuesday, May 26, 2020 8:00 AM
Joined: 4/13/2018
Posts: 7


Hello out there,

My DH has Alz and I'm completely alone with it.  I'm not sure how to reach out to fellow caregivers, but really need to be in an online group right now.

Thank you,

Tara


Lorita
Posted: Tuesday, May 26, 2020 8:30 AM
Joined: 12/18/2011
Posts: 11758


Hi Tara,

I'm glad you found this forum and decided to post.  When I was caregiving there was no support group nearby and I probably wouldn't have gone anyway but I found this forum and it became my support group - then and now.  My husband was diagnosed in 2008 and I lost him in 2015.  I was his sole caregiver and this forum was a Godsend  because I didn't know anything about what was happening and had no one to talk to about it.  At that time my sister was beginning to show signs of alz so couldn't talk with her.  My mother passed away in 1996 and she also had alz.  So, I came here.  I felt comfortable asking any question I might have and there was always someone there to answer.

 Are you the sole caregiver for your husband and do you have any relatives nearby?  Everyone here is friendly and want to be helpful.  So, ask anything however insignificant you think it might be.  There's always someone around to help.

 Again, welcome to the forum.


Bill_2001
Posted: Tuesday, May 26, 2020 8:36 AM
Joined: 9/16/2019
Posts: 77


Hi Tara, welcome to the group. Yes, you need a caregiver group. The more help you can find, the better. Nothing will make you feel as alone as caregiving for a person with dementia or Alzheimer's.

I have received a lot of great advice and support here. You will need it. I sincerely believe that this is one of life's hardest roads to travel. We are here for you.


65321
Posted: Tuesday, May 26, 2020 8:53 AM
Joined: 4/13/2018
Posts: 7


Thank you both for answering my post!  I'm still not sure how to navigate this message board so please forgive me if I'm slow.  I'd like to stay logged in most of the day if possible. 

I've read a couple of books on Alz and believe there are 3 major stages?

I believe my husband is in the latter part of the first stage.  He's deteriorating right before my eyes and it's frightening and sad. 

We have a neurologist and a psychiatrist but I don't feel I can express myself or his situation with either.

Thank you again,

Tara

 


65321
Posted: Tuesday, May 26, 2020 9:07 AM
Joined: 4/13/2018
Posts: 7


Thank you Lorita and Bill and God bless you both. 

Tara


very involved
Posted: Tuesday, May 26, 2020 9:24 AM
Joined: 5/25/2020
Posts: 9


 I am new as well. My husband & I received the definitive diagnosis of early onset alz in March.

The final diagnosis was no surprise for myself, our adult children.   My suspicion as well as the children’s was for over 2 years.  Hearing the words from the neurologist was like a stab in the chest.  

My husband was a successful health care provider for close to 4 decades.  We have been married for his entire professional career.   He retired this month.  This is so so difficult.  I am having such a hard time.  We are blessed with caring & involved children, brother-in-law & sister-in-law who are also in the health care field.

Very involved & hands on with the situation.


very involved
Posted: Tuesday, May 26, 2020 9:34 AM
Joined: 5/25/2020
Posts: 9


Would also like to ad that he has been in denial, until we all heard the words of the neurologist at a family meeting “this is not a normal MRI”, after seeing the radiologist’s report stating within normal limits.
Getting him to the dr & tested was so incredibly difficult.

Ed1937
Posted: Tuesday, May 26, 2020 9:44 AM
Joined: 4/2/2018
Posts: 2887


Hello Tara and very involved. Welcome to the forum. Sorry you have a reason to be here. I think you'll be glad you found this place. Whatever stage he is in, there will be someone here who has been there or is there now. We have a great group of people here who are willing to help in any way they can. You will learn more about the disease here than you will through a doctor. So pour your heart out. People here understand where you are coming from. Just remember that a lot of the things you read about here might never be in your future. Some people here will have a fairly easy time with caregiving, like me. Others might be at the other end of the spectrum. The more you learn about dementia, the easier it will be for you. Here's a link to some good reading. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
Ed1937
Posted: Tuesday, May 26, 2020 9:50 AM
Joined: 4/2/2018
Posts: 2887


65321 wrote:

I'd like to stay logged in most of the day if possible. 

Unfortunately, the software used for this forum is pretty lacking. You can log in, post a few times, and you might be logged off without knowing it. Or you might be logged in all day long. It's just one of the things we work around here.

 



Paul&Me
Posted: Tuesday, May 26, 2020 10:33 AM
Joined: 1/21/2017
Posts: 250


Hi Tara, welcome. When I first started reading here, I was overwhelmed with it all. I had to stop coming to the board and let the information sink in before I could emotionally handle the information overload. You'll see a lot here, and not all of it happens to all patients. The three major stages are mild/moderate/severe. My husband is now severe. When he was diagnosed, he was determined moderate-to-severe.

There is a 24 hour hotline with Alz.org if you need quick advice or problem-solving, or just a listening ear. 800-272-3900. I have friends and family that are about 30 minutes away, more are 45 minutes away. I have a local group that I can attend once a month, and the facilitator will help one-on-one if I request it. It helps a lot just to have some "normal" in your life too. Also, call the Alz Association office nearest to you, and see if you can connect with someone there.


HusbandHasEO
Posted: Tuesday, May 26, 2020 11:11 AM
Joined: 5/24/2020
Posts: 5


Hi Tara,

I also just started this message group and am looking for support.  My DH also has EO alzheimer's.  It has been incredibly difficult watching him deteriorate.  He was diagnosed in 2016.  Sometimes I think the changes are slow - sometimes I think... my gosh this is happening fast.

I don't know how we cope...I just keep breathing. 

I also realized after talking to my primary care physician that I needed to be on an anti-depressant.  That has helped me quite a bit with my my mood.  I was very resistant - just started this year to take them - and wish I had started sooner.

I found this link yesterday when looking at the posts here.  It was more helpful for me then anything I'd read before about stages and what to expect.

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

 

 


Jane Smith
Posted: Tuesday, May 26, 2020 11:44 AM
Joined: 3/23/2015
Posts: 103


Hello and welcome and sorry you need to be here. 

Due to the pandemic, most local support groups have gone virtual. You used to be restricted to a meeting location you could physically get to, but now you can attend a support group anywhere. Some are video calls and others are by phone, but you can join a video call with just audio from your phone. I would encourage you, and everyone really, to call the Alzheimer’s Association and let them help you find a group that will work for you. I wish they would publicize this better. 1-800-272-3900 anytime, they are always open. 

The support groups have been a lifesaver for me. I hope you are able to get the help you need. 


SSHarkey
Posted: Tuesday, May 26, 2020 12:41 PM
Joined: 3/15/2018
Posts: 533


A warm welcome to all 3 of you! As others have said, you will find support and a kinship here. We all in this this together at different stages. That helps immensely because we can support each other at almost any point. Someone has some answers or strategies that they’ve tried. This is my only support group. I have no local group so I depend on this one. Read as much as you can, visit the board often. I’ve learned so much just reading others experiences. Ask anything. There is nothing too simple or too hard to ask. We’re all here to learn and help each other.
65321
Posted: Tuesday, May 26, 2020 1:25 PM
Joined: 4/13/2018
Posts: 7


Thank you Ed 1937 and Everyone who has welcomed me here,

Thank you for the info on getting logged out automatically.

I'm so thankful to have been led to this group.  Last night I posted something on my local neighborhood watch site and a kind person guided me here.

The main thing getting me through his nightmare is the love I've always had for my husband. 

I read somewhere where when the loved one with Alz is at his meanest or coldest and appears to have lost all love for you that it's the time when he needs to be loved the most.

Thank you all for being here.  This group is a Godsend.

Tara


michelleinbonita
Posted: Tuesday, May 26, 2020 10:15 PM
Joined: 5/15/2020
Posts: 1


Hi Tara. I'm new here too. I've just been taking it all in for the last week or so, and have been learning so much. I'm just trying to get past all the tears before I can really put it all out there. I didn't think about coming to the ALZ  site because my DH doesn't have that, but his doctor finally recommended I find an ALZ support group. My husband had a pretty massive stroke 18 mo. ago. It affected the right side of his brain; frontal temporal and parietal lobes. He has 2 large infarcts in his brain. Although he recovered in the physical aspect, it has left him with major behavioral changes, and deteriorating all the time. The man I married is no longer there. The struggle is real. It's nice to know we are not alone.
Bholmes
Posted: Tuesday, May 26, 2020 11:21 PM
Joined: 2/24/2020
Posts: 30


I joined about a month or so ago myself as I needed an avenue as my DW has had Alzheimer’s for over 4 + years ago when she was diagnosed at age 61. Her condition is getting worse and worse and I just needed someplace to feel I am not alone in this. I am taking steps to try to bring in outside help now as  I just can’t work full time from home and care for her.

There are a lot of helpful and caring people on this forum and welcome.


mommom9
Posted: Wednesday, May 27, 2020 7:00 AM
Joined: 5/24/2020
Posts: 47


Hi, This is my first time also. My DH was diagnosed in 2014. I don’t know how to start. I feel so alone . This lockdown is hard I didn’t realize hoe much I needed hugs from family and just socializing.  My husband has a lot difficulty talking sometimes better than others. Looking at stages he seems between 5 and 6. He recently started having trouble with adjusting water in shower .  I also need someone to talk too.
Ed1937
Posted: Wednesday, May 27, 2020 9:13 AM
Joined: 4/2/2018
Posts: 2887


Welcome Michelle and Mommom. I think from reading the above posts, you can see that this is a good forum. Sorry any of us has to deal with this. 

For all the new members -  If you edit your profile and let us know where you are from, and the ages of you and your spouse or partner and any kids at home, it will make it easier for people to offer some help when you might need it. No need to give personal information, like names. It won't take long for you to become comfortable here.


DWck
Posted: Wednesday, May 27, 2020 10:58 AM
Joined: 5/26/2020
Posts: 2


Hi Tara

I just joined yesterday for the same reason. My DH has dementia which has progressed after a fall with head injury two years ago. We have no family nearby and I am his caregiver 24/7. I suppose I am fortunate that he remains pleasant most of the time. Our local hospice has a dementia program that is a great resource. I have had home health aides in the past just for a few hours a week which was helpful so I could run errands etc. That stopped due to Covid19 but I am hoping to start again soon. Please feel free to message me if you need to vent. We all need to do that at times! 

Carol


very involved
Posted: Wednesday, May 27, 2020 3:54 PM
Joined: 5/25/2020
Posts: 9


 Thank you Ed1937, I read the link to the article written by Jennifer Fuller-Ghent.

Tears in my eyes.  We seem to be at the early onset stage but so many things mentioned in her piece touches home.  I feel fortunate finding this caring & supportive group.


mommom9
Posted: Thursday, May 28, 2020 10:59 AM
Joined: 5/24/2020
Posts: 47


Hi. We live in NJ. So U feel literally trapped. I’m lucky to have children to bring groceries but we only see them thru social distancing outside. My children / spouses are nurses and my son a prison guard 

 So everyone keeps there distance which is so hard


mommom9
Posted: Friday, May 29, 2020 2:44 PM
Joined: 5/24/2020
Posts: 47


Hi. I’m also having trouble connecting
38Winks
Posted: Saturday, May 30, 2020 2:43 AM
Joined: 3/7/2020
Posts: 90


Hi Tara, Welcome. Sorry you need the forum but I can say you’ve found a great place.
eaglemom
Posted: Saturday, May 30, 2020 9:19 AM
Joined: 3/7/2012
Posts: 2506


Let me welcome you to the message boards. I'm glad that you've found us. If you will go to the top of the page and click on solutions - it will bring up numerous topics. By clicking on them you will find information. That is a good beginning point for information.

Have you contacted your local ALZ Chapter? With Covid 19 many chapters are all working virtually. You should call the helpline 800-272-3900 and ask for information. They will be able to help you find your local chapter and then you can see what, if any, support groups are available. Virtually support groups aren't the best, but its the best we can do during the pandemic. 

Also this message board is full of other's in similar positions. We are here to help you and to listen - because we are going through the same things and can relate.

eagle


Granmere
Posted: Sunday, June 14, 2020 3:47 PM
Joined: 1/2/2019
Posts: 3


Hi, although I had joined a year 1/2 ago, I have not been active looking at the Message Boards.

My DH was diagnosed after emergency surgery, had post op delirium and diagnosed with Moderate Alz.  My daughter feels it started more than 2 years ago, but since I worked FT I didn't see it. His delirium got better but his current memories got worse.  I had to sell the car, per his DR. instructions, But he thinks it was me who decided it.  He does not admit or agree that he has Alzheimers.  Wont goo back to that DR again, who gave us the diagnosis.  I finally retired and have since moved to be close to our daughter and young grandchildren. New home and nothing looks familiar.

We were watching our grandchildren 2 -3 times a week and he really enjoyed having them here, but not very interactive.  Since COVID-19, we don't see them but from a distance sitting in their driveway and watching them play.  MY DH has become less interactive, naps too much during the day, while I attend to chores he can't do, and now he wakes me up at 3-4 AM wanting to ask questions like:  Do you know me?  What is your name?  Do you know my wife?  I need you to take me home. NOW! Where's Marilyn (that's me) I answer him, and he says "I did not know that?"  Even about our daughter being his?  

Such a 24/7 caregiving.  He won't except someone coming in so I can do errands.  He wants to be wherever I am.  Maybe when this COVID is over we can find someone.  

This is just nice to see everyone's post and how we all deal with this horrible disease .


mommom9
Posted: Monday, June 15, 2020 9:13 AM
Joined: 5/24/2020
Posts: 47


Hi  Grandmere

I also moved with my husband . We moved last May to downsize and to be closer to family.  He has settled in and now enjoyed the features of this house. In the beginning he Always  complain and had vivid night dreams a lot. He still does of that now but slot less. I also point out how lovely it is here. Our new home is in a lovely country twin and we have slot outdoor space . However despite what we do this disease progresses and it’s one day at a time. After this virus is controlled I plan on getting more help.


Bholmes
Posted: Monday, June 15, 2020 1:38 PM
Joined: 2/24/2020
Posts: 30


Hi Tara, welcome to the forum. I was in the same position you are just a 2 months or so ago. Yes, you need a caregiver group. I have received a lot of great advice and support here lately as I just felt so alone taking care of my DW. You will need help and the experiences people have had can help as you navigate this terrible disease. We are here for you.
aod326
Posted: Monday, June 15, 2020 8:36 PM
Joined: 5/25/2020
Posts: 21


Hi Granmere.  A lot of what you said about your DH resonates with me, especially him wanting be with you the whole time.  When it's getting on my nerves a bit, I say to myself that I suppose I should be flattered! He made me laugh a couple of weeks ago, though.  He had 1.5 days when he thought I was someone else - he talked to me about his wife, asked me where Alyson (that's me) was, and so on.  The following day I asked him about the person who'd been with him while I was away.  I asked him if she looked like me, and he answered "yes, only heavier" - that would be by COVID-19 weight!  I thought it was hilarious!