New - feeling alone

Sollicita

This is my first post.  My mother, who is in her early 80s, has been showing signs of dementia (confusion,  confabulation) for about a year.  She did have an initial consultation with a physician a few months ago, but cannot get the recommended follow-up testing for a few more months.  She is still herself, but less so, and she withdraws more each day.  She is my best friend, and I am terrified for her.

My father is not coping.  He is angry and impatient with my mother. And while he recognizes that we all need help, he won't actually *do* anything.  When we first started noticing issues, he said he was going to figure out how to get my mom a medical evaluation.  Months passed, and he didn't do anything, so I finally broached the subject with her (which was gut-wrenching and awful) and got her to that first appointment.  He was livid and lit into me.  Now, while he recognizes that he needs to help with or take over some of the tasks my mother has always handled (notably, the finances) he won't take any action without "thinking about it more." He has promised to seek guidance from a social worker, but hasn't actually done it.  I'm not sure I could do anything to help, and in any event, I would be afraid to, given how horribly he reacted to my setting up the doctor's appointment. You can probably tell that there is a longstanding dysfunctional dynamic at play.

My siblings are sad, concerned, and detached.

Shockingly, none of my mother's friends have commented on her condition, until recently. A longtime friend asked my father if mom was ok, as she seemed not herself. My father said everything is fine. I understand why he did that - my mother is extremely private and would absolutely *hate* the idea of people knowing about this. At the same time, it should be obvious to anyone who knows her that something is not right, so I'm not sure there's much point in denying it. Plus, we all need all the support we can get. I'm curious how others have navigated this situation.

That's a lot of words just to say that this experience is terribly difficult and isolating for everyone involved.  I'm glad this message board exists, and I'm looking forward to learning from all of you.  Thanks for listening.

Anonymousjpl123

Hi solicita,

I am still very new to this whole thing too, but relate to so much of what you said. Dysfunctional family dynamics, moms denial, friends’ denial. One thing I can reassure you of: even the most unhelpful/definitive doctor visit is a step in the right direction. For my family the appointment with the neurologist, though my mom “passed” all the tests, was the first step in getting help. So I’m so glad you at least made that appointment.

Others will know more but for me there had to be a few jarring incidents for my mother to acknowledge any need for help. 

So what we did (me and one other sister in law who is very involved) is start to slowly prepare. To make the hard suggestions, like you are doing. Having someone help with finances. Looking into care. I began reading everything on the Alzheimer’s association website. I am sort of obsessed with the hotline because I called twice and the level of information and help I actually received was shockingly great. 

What I can tell you is there is a lot of help available. And you are 100% right to start now. Hope things get better and you get lots of good advice here.

SusanB-dil

Hi Sollicita - welcome to 'here' but sorry for the reason.

It sounds like your dad is just overwhelmed thinking that his life with DW will never be what it used to be. Maybe not quite denial, but obviously not wanting this to happen. That is understandable. This is a drastic change for all. Is there a trusted party to him that could speak to him about these changes to his life?  A clergy or a doctor? I'm glad you and siblings are seeing that some things need to happen, even if dad is not stepping up. 

Who has DPOA for your folks, and HIPAA accesses? That is very important.  Is your dad showing any signs of cognizant decline as well?  

You can also check 'solutions' tab above, check out the 'Archives' for many subjects that may be relevant, and also, the alz association has a helpline number - 1-800-272-3900 with no fee. Just ask to speak to a care consultant.          They may have some ideas for you, maybe even to get dad on-board with helping, not hindering, and maybe help him 'face' this instead of just not wanting to...

Beauchene105

 New here. Only child (no siblings, ever) making sure my mom is happy and comfortable with the best care possible, although I live nearly four hours away. My mom is 94 & somewhere between stages 5 and 6 dementia. She and my dad always lived in the city she's in (he died a few years ago), and she has one younger sister there (88!) who enjoys visiting her and can't drive far. She is in a wonderful non-profit ALF  & also has great private sitters 7 a to 8 p.  My mom is very outgoing and social. She enjoys visiting with others at the ALF.

I have a couple of questions and would appreciate input. 

1. is there any advantage in having a formal diagnosis? There is absolutely no doubt that my mom has dementia and it fits the characteristics of stage five and six with some overlap. She hates taking medicine and it is a daily war pretty much. Her GP said he didn't see any advantage adding more.

2. At what point do people move their loved ones to memory care? The current arrangement is working fine, but looking down the list at stage seven, I see how severe it will probably get. Assisted living with sitters all day and monitors during the night is working well for now and I don't want to change unless it's for her benefit. Thank you so much for any input. I am happy to find a source for support.

GlassyGal

I'm brand new to this, too, and also feeling very alone. My dad cares for my mom, but his health isn't good either, and my brother lives out of state. I just wanted you to know you are not alone.

Cinjk1

Hi. I’m new here and joined in hopes of getting some insight into how to best take care of my mother in law. She was diagnosed with Alzheimer’s about a year ago. She has been living in an independent living facility for about two years. About eight months ago, we realized that it was time to look for an assisted living facility. We found one that we were very happy with and got on their wait list. When they finally called to say they had a room, we quickly brought her in for an assessment. We were shocked to find that she assessed not for assisted living, but for memory care! So back on the wait list we went. We immediately began looking for other memory care facilities since it was becoming obvious that she really didn’t need to be in the independent living situation any longer. Through all of this, she began getting agitated, angry and started shoving people and slapped a lady twice. We found another memory care facility that had availability and started the process. When this new place tried to do an assessment, our loved one became violent and started yelling at them and they could not do the assessment. We were told that she could not move in until we got her behavior under control! Today she was especially angry and agitated and also paranoid. She was so out of control that we took her to the emergency room to make sure there weren’t any medical issues going on. There were not and they released her. She is now at our home and her doctor added another medication. We are hopeful that this medication will help calm her enough to get her into a memory care facility. My question is… what if meds don’t help? What else can we do for her? She needs and deserves more/better care than my husband and I can give her and we just don’t know where to find options/help!

Kiki Fikar

Good morning! I am brand new here and looking forward to soaking in the wisdom from all of you. My Dad is 83 years old and diagnosed last year with Alzheimers/VD. He had been diagnosed earlier in the year and then suffered five strokes. He is now home with my soon to be 82 year old Mom. They have assistance a few days a week but as things have progressed, my sister and I have become overnight assistance. At the stage where we are looking at Memory Care or professional help overnight. The problem is our Mom not wanting assistance in the house overnight. We are trying very hard to make this transition all while dealing with everything that comes with the every day challenges in this relatively new world.

elliotlh

Hi, I know the beginning stages are scary, so I am so sorry your family is coping with this all right now. My mother had similar issues getting treatment started when she noticed signs in her mother. My Grandmother's sister did not want to accept that her sister was succumbing to the same disease that afflicted their mother. Now it is important for you to trust your instincts and your gut when bridging the topic of treatment and next steps with your father and your mother's doctors. The most important thing is for everyone to learn how to become an advocate for your mother. Since unfortunately, soon she will not be able to do for herself. Many of, my grandmother's friends felt that they didn't have the time, resources or energy to aid in efforts to better my grandmother's situation. She is 80 as well, and unfortunately many of her friends have health issues, or spouses they care for. This caused a lot of the socialization my grandmother was used to, to dissipate. Fortunately, a combination of diet changes, efforts from everyone in the family to change their communication style with her, and an accumulation of friend's that were experiencing similar life changes to my grandmother has improved her quality of life.

Stirlsmom

Hello I am a newbie too.

I am so happy to have found this site.  I have an 81 year old mother who has dementia with confusion and confabulation and she moved in with my husband and I almost 2 months ago.  I am an only child so I am the only person she has to help her now.  We are going thru the process of obtaining resources that available to help her along with having PT therapists and Speech Language therapists.

This journey came on quickly and all the information is confusing.  We had to move her from her home which is 3 hours away from where we live.  She isn't able to be on her own anymore but also doesn't like living where we live.  She isn't a happy or kind person and we have never been close.  Sadly, I think my feelings towards my mom may not be as compassionate as many other caregivers feelings are towards their loving mom.  I know this is a terrible thing to say but it is the truth.  (sorry to offend)

There is so much more that I could include in this post, but I already feel better having people to reach out to about her condition, because none of my friends or distance relatives can relate to dealing with it.

Thank you all for being here. I look forward to reading thru all of the posts.

SusanB-dil

To GlassyGal, Kiki Fikar, elliotlh, Stirlsmom - welcome to 'here', but sorry for the reason.  

I know that I've learned a lot from these boards, and the 'solutions' tab above, and specific search in 'Archive'.  I so appreciate so much of the wisdom and advice from so many of these folks that have been there/done that/going through it now...   I know I don't feel as alone.

Angela B

I just signed up today and I want to hug EVERYONE after reading their posts.  Suddenly I feel slightly less alone.

JillMM12345

Please know you (sadly) aren’t alone. I could have written much of this post myself. We have known for a few years but it’s getting worse and being home with my parents for Thanksgiving was an emotion I do not have a word for. This is terrible what happens to them. You aren’t alone - thank you for posting and letting me know I’m not either I really needed that.

ZoeS

The feeling of being alone is sometimes overwhelming in addition to all of the emotions to deal with.  All I can do is try and support my Dad but my added layer is that my brother and I can't even look at each other and he is no support.  I am also new here and it is helpful to hear others experiences to know that we are not alone.

*Ollie*

Hi Solicita and everyone else new,

My husband and I are about a year into this, having moved my mom in with us (across the country), not realizing she had dementia.  We thought we'd be helping to take care of my independent, aging mom and that is sadly not the case.   

Not sure if it's because she lives with us, but like Stirlsmom, I find it very difficult to care for my mom and to feel the compassion some seem to easily access in this situation.  We take great care of her but we most definitely act kinder than we feel!   There's a lot of frustration, irritation, and annoyance that we swim through.    There's nothing fun about this.