Good morning. need to talk

shellgirl

Hello everyone.  I am Pamela . I am 69  and Caregiver to my husband , Dan , who has  Dementia... ( Vascular and  possibly Alzheimers )  Diagnosed in early October 2021... so we are fairly new to this journey.. although it has been going on since 2017  and was not recognized or determined til 2021.  He has been staged  at 4-5 .   He scored  a 19  out of a possible 30 on the MMSE Cognitive test.  We were told he  has significant Dementia  which I guess means  Moderate Dementia. 

I feel very alone and helpless at this point.  There  are many decisions to make  and plans to get in place and  I feel very overwhelmed .  Dan is in denial and refuses to even discuss it  with me..  He has some good days where he is ok and then other days he is not. 

I could use some good advice.... and hugs 

Pamela 

    

Crushed

Ill send hugs and welcome and warmth and tell you this is a very nice place with lots of advice and experience.  No wants to be here but we all know that only those who have been there and done that can really empathize .  My mother had vascular dementia My wife has Alzheimer's

Can you put the  state where you live in  your profile ?  it makes a big difference to Medicaid

shellgirl

thank you for the warm  welcome.  WE live in Central NC .

M1

Hi Pamela and welcome. Youve come to a good place. What Crushed is referring to regarding Medicaid is whether you've addressed your legal and financial affairs yet, this is a critical first step for everyone. Certified elder law attorneys can help, with listings by location at nelf.org.

Youll learn a lot here as well as get the support you need. For instance, your husband isn't in denial, he has anosognosia, which is part of the disease (true inability to perceive that he is impaired). You have to learn to stop correcting, trying to argue, trying to reason. It will only frustrate both of you. But its heartbreaking, because it changes your relationship.

Good luck.

Ernie123

Hi Pamela

Welcome to the forum, I know you will get good advice and understanding here. My DW was diagnosed with Alzheimer’s in 2012 and now lives in a memory care facility. In addition to the comments above I would recommend you make personal contact with your local Alzheimer’s Society. If you have an active local branch you will find good counseling and advice. Often there are workshops where you can learn about the disease, caregiving challenges and how to cope. I also find the support groups very helpful. Due to Covid we now meet on zoom but it is very helpful to have a discussion about all the everyday challenges with a group of people who “get it”. I have found many of my friends and former work colleagues are uncomfortable talking about my situation with me and I find it hard to share my personal thoughts and feelings with them. However the Alzheimer’s Society counselors and support group members are totally open and understanding. We share tears and laughs in comfort. Living alone is a challenge and I need that social contact. Start building those links and friendships now and they will be a solid support for you in future years as the challenges of care grow. 

arizonadianne

I’m Dianne. Hugs! I’m new too and noticed immediately that my panic & isolation are already starting to recede. I know this because I took some time for myself yesterday and really enjoyed planting tulips (this is the right time to do that in AZ). I don’t have any advice; however I am willing to share my experience and welcome you here with my own broke-open heart. I’m a “lister;” when I feel overwhelmed I write things down, and then when I accomplish something, I cross it off. I try to keep my lists away from DH.

Being new I’m reading everything that catches my eye and I stop if it gets to be too much. I like knowing I can come back “here” anytime to learn some more. I am torn up inside with lots of feelings of inadequacy coupled with thoughts like, “I hate this,” and “This will only get worse.”

We fight a lot because my DH doesn’t like many things I prepare, won’t do many things I suggest, and doesn’t use many things I buy for his enjoyment. I’ve never felt so rejected.

My prayer is that my DH will above all not be injured in a fall and that this will not be any harder for him than necessary. For myself I ask for courage, wisdom, and stamina. Oh and I could use some fun & laughter. I’m unhappy with myself as I become a real stick-in-the-mud trying to keep everything together.

Ed1937

Pamela, welcome to the forum, but sorry you need it. You will get good advice here, likely better than you would get from a doctor who hasn't been "in the trenches". 

It sounds like your husband and my wife are at about the same place on this dementia road. My wife was diagnosed in June 2018 with probable vascular dementia, and she scored 17 on the MMSE about 4 months ago. 

Ed1937

arizonadianne wrote:

We fight a lot because my DH doesn’t like many things I prepare, won’t do many things I suggest, and doesn’t use many things I buy for his enjoyment. I’ve never felt so rejected.

Dianne, as hard as it might be, you have to find a way to get over this. Be extra nice to him. Give him a hug or a kiss, and tell him you love him. If we act stressed or angry, they will pick that up. We really have to become good actors. When their brains are impaired, they will act in ways that will make them seem like they don't care if they hurt us. Once you learn to act differently around him, I guarantee your job will become easier.

Beachfan

Hi Pamela,

Welcome, but sorry why you’re here.  In addition to getting all your ducks in order, legally, financially, medically, and emotionally (for you), please download the following : “Understanding the Dementia Experience” by Jennifer Ghent-Fuller.  (Hoping a tech savvy  forum friend will provide the link).  It’s a “Cliff notes” on dementia.  All you basically need to know in one 42 page, one hour’s reading, document.  From there, keep visiting this forum, ask questions, offer advice, research the archives for topics of interest, and above all, don’t go looking for trouble.  (Aggression, incontinence, wandering, sundowning, hygiene issues- - you may encounter all, some, or none of these- - don’t waste time worrying about what may or may not happen.) Good luck and stay strong.  

CStrope

ArizonaDianne, it is true, you find ways to make sure things stay even keel, so as not to "poke the monster", so to speak....

The problem is, while complying with everything our LO needs/wants and trying to maintain that level of calmness, we lose ourselves.  We are no longer the person we used to be, we are the person that we have to be in order to survive in this hell we've been thrust into.  I am not being a downer, but more of a realist.  Once I started adjusting my attitude and not disagreeing or pushing my DH, things became much calmer in my household.  But with everytime DH was pushy or defiant and I smiled and accepted it, I turned into something other than the person he married 35 years ago. I became someone forced to change who I am in order to improve our daily lives.

ButterflyWings

Welcome to both of the new members here. Hang in there! 

Here are a couple of helpful articles including the link Beachfan mentioned. It really is the best resource. Reposting a couple of the things I learned that helped me most: 

1. Anosognosia is a real thing. This article helped me a lot.  6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

2. DH’s neuropsych doc and memory  team said "get your affairs in order immediately". I didn't know where to start. Search "Elder law attorney" on this forum for outstanding (life saving, future saving) advice

10. Read this excellent article and share with interested family and friends:  

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Paris20

Welcome, Pamela. I just want to say a few words about the term anasognosia. It refers to the inability to understand and accept one’s condition. It isn’t denial. Someone who has it, like my husband (diagnosed with Alzheimer Disease in 2015), thinks he is absolutely fine. Making reference to his declining cognition will be met with surprise, anger, and conflict. There is no reasoning, no argument that will convince someone with anasognosia that he/she has changed, has anything wrong, or needs any help.

Given this state of affairs, all we caregivers can do is keep our LO safe, healthy, and comfortable. When my husband says no to lunch, I don’t ask again. I just bring him what I’m eating. He can’t remember what he just told me anyway. Serving our lunch seems perfectly normal to him.

Please come here often. You’ll get information, support, and those hugs we all need.

Mint

(((Pamela))) agree with all of above.

Joydean

Welcome Pamela. I agree with what ever one else has said. I too am fairly new, my husband was diagnosed in 2019, but has had symptoms since 2015 or even before.  I have learned more from the wonderful people on this format than all the doctors we have seen. Keep coming back and you too will learn, and yes cry with “new best friends “, and laugh also. I didn’t think for a long time I would be laughing at any thing, but here I can laugh. 

Best of luck to you and your husband. 

arizonadianne

  When my husband says no to lunch, I don’t ask again. I just bring him what I’m eating. He can’t remember what he just told me anyway. Serving our lunch seems perfectly normal to him.

Paris20, I just tried this and to my relief, DH ate an apple and a half-sandwich. Thanks!

60 falcon

Ed1937 wrote:

 Give him a hug or a kiss, and tell him you love him. If we act stressed or angry, they will pick that up.

A smile and a hug often goes a long way with my wife, particularly when her anxiety spikes.  It's not easy to do when all I want to do is cuss, yell, or run away.  My acting skills are improving.

Buggsroo

Hi Pamela, welcome.

It is tough dealing with someone who doesn’t think anything is wrong with them.

The tips people have provided are great. Don’t forget to breathe. Try to have some me time so you can decompress. Good luck, this forum is a lifesaver.

Sligo177

Hi Shellgirl,

By reading all of the responses you know you are in a caring and understanding forum, and I add my welcome.  I read others' stories and find comfort, and I know you will as well.  It's scary not knowing what will happen. I try to tell myself, just deal with what's happening right now, today.  Tons of great advice in these replies, from those who have been and are going through it. I often read the experiences of others, how they navigate all the difficulties that come up, and it really helps.  God bless you, I hope you can find time for yourself, and definitely find people to help you.  You need to take care of you.  I remind myself that every day!!

Ernie123

Here is the link to the dementia overview recommended by Beachfan. I agree it is a good resource.

https://www.smashwords.com/books/download/210580/1/latest/0/0/understanding-the-dementia-experience.pdf

Iris L.

arizonadianne wrote:

We fight a lot because my DH doesn’t like many things I prepare, won’t do many things I suggest, and doesn’t use many things I buy for his enjoyment. I’ve never felt so rejected.

Welcome Dianne.  I am a patient with a diagnosis of cognitive impairment not otherwise specified.  I do not have Alzheimer's Disease but I can identify with many attributes.  Please get out of thinking about fighting a lot.  Your DH is not fighting, he truly doesn't know what he wants or likes.  I can say this because I was like that.  I could not make any decisions, and I do mean not any!  In fact, you should work on getting out of the habit of asking so many questions of your DH, it is truly disturbing and frustrating for him.  Accept that he can no longer make decisions.  Even if he does make a decision, he will forget and reverse in two minutes time.

My prayer is that my DH will above all not be injured in a fall and that this will not be any harder for him than necessary. 

Dementia is a neurological disease and includes poor balance and poor ambulation.  Read about fall prevention in seniors and follow the advice.  Remove trip hazards.  Increase the lighting in the home as necessary.  Avoid sedating medications.  Also, be on the lookout for signs of Parkinson's Disease.

For myself I ask for courage, wisdom, and stamina. Oh and I could use some fun & laughter. I’m unhappy with myself as I become a real stick-in-the-mud trying to keep everything together.

Caregiving for a PWD is not intuitive.  Read the online reading material. Learn from the members here.  They are knowledgeable and willing to share.  Best wishes to you both.

Iris L.

 

Shrtstaq

Hi Shellgirl, I’m Shrtstaq, and I too am new to this journey.  I’ve been hesitant to post here but you gave me the courage to jump in.  My husband was diagnosed with early stage Alzheimer’s last September.  We just held each other and cried.  I’m losing my lover, my best friend and my rock.  I think the change in his personality scares and saddens me more than all of the other symptoms.  Hopefully you and I, and other newbies will find some comfort and strength in this community. Good luck to you my friend.

arizonadianne

Iris L, Thank you for this insightful explanation. I took a screenshot of your kind words to help remind me about all your good advice. Sending hugs of gratitude!

Ed1937 I have started my acting lessons and CStrope I definitely needed reminding about adjusting my attitude, and I bet I will need to be reminded again.

My apologies to all as I clumsily learn how these boards work. Shellgirl and Shrtstaq, it sounds like we three are starting together here.