I Feel Lost, Depressed and So Very Sad
Hello. I am new to ALZ Connect. I am looking to connect with others who have or are experiencing what I am going through as an adult child with a parent with ALZ and another parent who is losing it as the care giver. I am hoping to connect with others who feel similar to what I feel so maybe I won't feel so alone in this nightmare. I am not even sure how to articulate what's going on so forgive me if I am over-sharing.
My Dad was diagnosed a few years ago with Alzheimer's and he has entered into a more severe stage- sleeps more than he is awake, is incredibly confused, VERY agitated, isn't talking much, needs assistance with ADL… My Mom, who has been his primary care giver, is beyond exhausted, scared, anxious and as a result, I feel I am almost witnessing, in real time, the demise of my Mom too. My parents have been married for 60+ years. My Dad was always "king of the castle" while my Mom, his "dutiful wife." As their daughter- I feel such a deep sense of responsibility to support and help however I can. I too feel exhausted, I feel unanchored and as a result of all of this, I feel detached from other aspects of my life- as mother, as wife, as friend, neighbor…. and this causes extreme anxiety and guilt. Hoping to connect and find community. Thank you.
Comments
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Welcome. You are certainly not alone in your situation or your feelings! First of all, remember, just by you reaching out to a community such as this one shows that you are a loving, caring daughter who is doing everything they can for their parents. So kudos to you, first and foremost! And as a caregiver (just in a different role), you must take care of yourself (and your own family) also.
Does dad see a neurologist, primary physician, etc.? There are drugs that can help with agitation. As the disease progresses, it becomes more difficult to manage. Has he been evaluated for hospice? Once he qualifies, hospice can provide assistance that will help your mom care for him. Would finances allow for some in-home help, even on a part-time basis? Would mom be open to this idea?
I don't care for my dad in my home—he is in a MC RCF—but I am his POA and therefore manage his care and finances and even this is enough to make me exhausted and neglect other people in my life. So I can completely understand what you (and your mom) are going through, as can everyone here. Of course you feel responsible to help your parents however you can.
Others on this forum will have great advice. I'm glad you found this great community but so sorry for the reason.
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Hi there!
I became an only child after the death of my.sole sibling & I currently only have one surviving parent.
My DM has Dementia and I have a life threatening disease that will be taking me out. Which of us will go first, only God knows.
I say all that to let you realize you are not alone. What I would strongly suggest is for you to have a family discussion with your husband and child/ren. If the young ones are minors, share only age-appropriate info about grandpa. If they are adults, let them know your expectations of them as the whole family has an active role to play in caring for grandpa.
My DH and adult child are fully involved in helping me to stay sane and stay the course. My mom and I were extremely close throughout my adult years. Sadly, Dementia has caused our friendly mother-daughter relationship to turn into a working relationship of nurse-patient.
They help me to strategize. They take her to some appointments. They moved her and set her up in her ILF apartment when she moved last year. Were it not for them, I'd be buried under the weight of mom's healthcare needs. She has opted to tell no one else, so my support system is extremely limited.
All the best with enlisting the others to help you afford the best care for dad, and mom.
To begin with, get mom to start the process of divesting herself of responsibilities by assigning you to be dad's durable POA and Healthcare surrogate.
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Welcome. It’s not uncommon for the primary caregiver to end up with health issues due to neglecting their own care. Could you convince your mom to move your dad to a memory care facility or nursing home on a temporary basis ( a month)? This would give you and her a chance to focus on her health for a bit. After his temporary stay you could reevaluate what should happen next. You might want to look for a facility that would offer an assisted living wing for your mom and memory care wing for your dad. Care facilities are very expensive! A vacation home or even their current home may need to be sold to cover the cost. Do you have any involvement in their finances? If not it might be good to see if she is willing to share information. Maybe if you just tell her you need the information for down the road if anything were to happen. You really need to get a handle on where they are financially, since unfortunately this will determine their options. Depending on your ability to be involved you might want to avoid giving your mom the exact cost of a facility. The high cost might deter her. If money is an issue then you will need to look into Medicaid. Generally medicaid only covers a nursing home (maybe some in home care depending on your state. Do you have a DPOA for both of them. It may be too late for your dad to sign anything. You might be able to find some help with your local commission on aging. They can’t give you all the answers, but they can give you phone numbers and contact information for places that may help. I avoided medication for my anxiety for a long time. I’m glad I finally talked with my doctor.
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Thank you for your message. I left a lot of things out in my earlier comment. My parents moved into a senior living center a few years ago after my Dads diasnosis- their place is 5 minutes away from both my brothers family and mine. They live on the independent side and the building also has assisted and memory care floors. I thought we were all on the same page that when my Dad got to this point he would go into memory care. Except my Mom is hell bent on staying together in their apartment. For the last 3 months they have had 24/7 care in their apt. My Mom wants her privacy and some independence back and has changed the care to one 12 hour shift starting this weekend. I’m freaked out with the idea of her alone with him for that big of a stretch.
My Dad has been on Serequil to help with the agitation and we have had to adjust it a few times. Yes he has a neuro. His primary wrote the order to be evaluated for hospice services. I hope the assessment happens soon.
Thank you for your comment. It helps to know this community exists.0 -
Hi. Thank you for your message. I agree with a lot of what you shared with me. My young adult kids, who are very close with my parents, are aware of what's happening. I know it's not suggested but I try and hide my pain/tears from them as much as possible. They see enough, I don't want them to experience my pain and they become broken like me. I nudge them to keep in touch, visit, FaceTime and they do. My husband has been very supportive and helps even when I don't ask for help. We have revised POAs and I'm on it for both parents. I am sorry you lost your sibling and one of your parents…I can't imagine that pain and am sending you my thoughts. This feels like the darkest of times.
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Thank you for your message. I don't know if my replies are being sent to the right person but this one is for H1235. My Mom is hell bent on not moving my Dad to MC despite that being the plan when we moved them to the senior care facility in the first place. They live in independent side, the MC is attached to their floor. Despite it seeming like it's what's best (and I am not even 100% sure myself), my Mom will not agree. It is my belief that she is going down with the ship in real time. She comes up with reasons upon reasons not to do MC. After a fall my Mom had (which came as a result of caring for my Dad), we hired 24/7 care givers which has been ongoing for 3 months now. My Mom wants her privacy and independence and is dropping the 24 hr care into 12 hour care as of today. So, she will be in the line of fire once again. She is stubborn!! She is the dutiful wife and I don't see a way to change her mind- I feel like I keep trying, begging her to save her own life. She won't listen. I know this isn't going to end well, I feel powerless. I have a sibling that isn't very responsive to me but supports what's "best" for both parents. I just found out yesterday we can apply for 1 month "respite" to "try" the MC but I don't know how to get my Mom to agree to this. If I share that this is killing me, she will either stop sharing with me altogether or carry the burden of my pain which I think could kill her. I don't know if any of this makes sense….
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I often feel like there are no good options. No matter the choice someone will suffer. It’s trying to decide the best of several very awful options. I’ve come to realize with some of this that there really is no “right” answer. You just make the decision you think are best at the time and try not to beat yourself up too much when things fall apart.
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I wonder, @tootz , if it is possible to reframe your mother’s objections and figure out how to address what’s worrying her. The logic of “We all agreed to this,” “This was why you moved here in the first place,” “You are hurting yourself,” etc., clearly isn’t working. Why? Hmmm… Is she fearful of being alone? Is she hanging on for dear life to a hope/fantasy of a return to an earlier state of things? Does she object to letting other people (maybe esp. women) help your dad with intimate things like bathing or toileting? I don’t know the emotions here, but you might.
If you can figure out the worries—even if they seem irrational to you—perhaps you can start to think of workarounds. Could a plan be made for her to spend a chunk of each day with your dad? Could she have meals with him? Are there specific chores involving his care that she can retain? Or if she fears being alone at night, maybe a family member could stay over with her in IL for a night or two, “until you get used to it”? I am just thinking aloud here.
She wants to be in control, and at the same time the situation is spiraling out of everyone’s control. What does she need to help her through this? Is that anything that can possibly be provided, even in part?
Changes are going to have to happen. You know that. Your mom probably knows that at some level too. So the hard choices must be made. But there could be ways to respond to some of her emotional needs too.
I wish you the best here. It is so hard. I have not faced the scenario you are describing, but I have made some very hard choices that helped in some ways and not in others. You’ll get through it.
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Thank you @tootz ! My having to be the sole caretaker for my DM during these dark days, makes my grief & loss just as vivid as when they died.
I am glad you have family support. It is vital and it is what will help you to stay sane. Many days I find myself telling my husband that my mom's dementia is going to drive me insane before she even gets to stage 7. It is so very, very, difficult.
I never spare my adult offspring from seeing my grief. Yours are observing you whether you are aware or not. By hiding your tears or pain from them, they are repressing their own, which is not good for anyone. "A family that grieves together, heals together."
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Thank you to all of you dear souls for helping me with your words of wisdom, ideas, thought provoking questions and compassion. I spent NYE at my parent's apt (care givers off) and I was able to have a deep conversation with her and helped her break down the fears. She was able to see that MC is the best of two terrible choices. We have a meeting next week with the MC care team and will plan with the social worker the best plan for transition. I feel relief but a whole lot of pain too.
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I’m glad you were able to figure things out.
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Thank you for the update! It’s great that mom and dad live in a place where they can still be together, hopefully that brings mom some comfort. My thoughts are with you as you make the transition. If it’s rough at first, please stick with it and don’t second guess the decision. We’ve all been there and they will adjust, it might just take a little time. Keep us posted!
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@"tootz " - I feel like finding this post was a miracle. I just randomly signed up today. And.....I was literally going to write almost word for word what you did in your OP. My heart goes out to you because I am you! When you said married 60+ years, mine have been 52, and the "king of the castle" statement almost blew me away, as that is my dad to a T. We always say Pop and the 7 girls (wife, 2 daughters, and 4 granddaughters). He is quite the proud man. So with this, you are probably thinking that my father is the one with this disease, but it's actually my mother. But all those statements above are, IMO, really hurting my mom as she is the "dutiful wife" as it's ingrained into her for the past 52 years. She took care of EVERYTHING and is the most selfless person I have EVER met in my life. I am not bashing my dad here, totally. He needs help too but is too proud to ask. He has never had to be responsible for things like cooking, cleaning, activity planning, etc. He will do ANYTHING she asks of him but for her, she could ask the same thing 5 times within 5 mins. I feel like as caregivers, we need to do what is best for them, not us and maybe my dad is feeling a little denial and/or sadness and my mother is not doing very well. She is always depressed, not eating, angry with my father and I am over here (just me and my 14 year daughter - I do have an older sister that totally sides with my dad but she hasn't spoken to me for like 25 years) just wanting to help so bad. I am even 100% available to help her right now and my father doesn't want to give up his routine and move closer to my daughter and I. I know they say moving someone could not be good for them but how can her day to day now be good for her. She walks around like a zombie most days and is doing some very out of character things. Okay, I am glad I got that all out and I am truly grateful that I found your post tonight as I know I am not alone. My anxiety has been through the roof (go to bed 3am-5am most nights) and it's hard to keep my sadness from my daughter as we live in an apartment and very close all the time. I just want to do what's best for EVERYONE and I am running on empty. Thank you, again @"tootz " SO SO much and I am grateful to hear the good news of your mom willing to try out MC. One day at a time!0
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@ktasalls Hi and I'm glad you found this place. I understand that you are wanting to do what is best for your parents. Make sure, though, that you prioritize your daughter, who is your responsibility. Nothing that we do can change the trajectory of Alzheimer's, but you have much influence over the next seventy years or so of your daughter's life.
The first priority when making plans is to determine who has the Durable Power of Attorney (DPOA). That is the person with the legal right to make decisions for the person with dementia (PWD). If that is your Dad, then that is who will be able to make the decisions. You can try to influence his thinking, but you're not going to be able to make him move. Does your sister live near them now? He may be content with that situation.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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