Overwhelmed
Comments
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Hello Bugj,
Welcome.
I relate to the overwhelmed aspect of the experiences of loving someone who's experiencing AD. I am new here, too.
Sadly, I can not opine that everything will be okay.
I can suggest that the folks who'll be along with more eperience than I will have valuable and insightful information.
I'm caring for a LO in stage 4 of AD and while much is okay, much is terrifying and heartbreaking. Glad you're here.
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Bugj, sorry you have to join us. But this is where you'll find support for your plight and others who have shared experiences on this wretched path. "Things will be OK" is rather subjective. It depends on your POV. In my case, it's taken a very long time but I've come to a point of acceptance, so I know "things will be OK" no matter how dire the situation--there's always a solution, even if it's not the one you'd like to see. The journey will not be easy. Read all you can. Learn all you can. Arm yourself with knowledge. Get all your financial affairs in place--talk to a CELA, setup DPOA/trust etc., and start thinking about Plans A, B, and even C for the ongoing care of your LO as the disease progresses.
Come here to read what others have gone through by doing a search--there's a wealth of information here--or ask questions, maybe just to vent. We know and understand.
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Thank you for the welcome. My husband is also between stages 4 and 5. He has good and bad days. What hurts is that he knows when the days are bad. And it breaks my heart to see him struggle. He used to be so good with numbers and so sharp. Now he has trouble reading a letter, adding simple numbers, trying to remember the next step in a task. I will let him try and figure it out but he gets frustrated with himself. And then I step in. He sometimes can't remember the names of people that he has known for years. After a while the name might come to him or he'll even forget about the conversation.
This whole thing scares me. I have so many questions. Like how do I know if I'm doing the right things for him?
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Hi bugj and welcome. You just have to trust yourself and do the best you can. If you read a lot of posts here you can learn a lot about potential scenarios and strategies.
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Will you survive? Yes, but your life will be forever changed.
Now to your question "will things be OK". The degree of OK depends on your degree of information about the disease. Your education is the determinant and this site is one of if the best source sof information you will find.
We understand and we care.
Judith
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Bugj,
The “normal” OK has probably left the building. But I have gotten excellent feedback here from folks who have been on this road for a while so use this forum to help yourself and to help others, communicating with others is very useful I find. The single best comment I have received is this: It is just as important to take care of yourself as it is to take care of your spouse, your life and wellbeing is just as valuable, don’t neglect yourself.
Bill_2001 just posted two sets of excellent information, take a look at those.
https://alzconnected.org/discussion/67581/helpful-suggestions-eight-years-in-part-2#latest
All the best in your journey.
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Welcome! I'll address the question of whether you're doing what's best. First, you have to determine what "best" means to you. For some people, it means keeping their loved one's body as healthy as possible: no processed foods, no sugars, exercise every day, etc. For others, "best" means helping their loved one enjoy moments whenever possible, which may include treats, walks or car rides--whatever seems to provide happiness. Early in the disease, this can also include vacations of a lifetime and other forms of happiness. For some "best" may relate to less stress or more smoothness in daily life.
Once you've thought about what is best for your family, it's easier to find a path forward. Be aware, too, that the definition can change over the course of life, as everything else does. Guard against impossible goals ("best" would be everything gets back to normal)--that's not going to happen.
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Welcome fellow traveler - we are always glad that a new forum mate has found us, but sorry for the need.
I will add to the excellent feedback you have received above, that -- no, things will not be ok. Dementia is a heartbreaker and homewrecker, and that is just the facts. But YOU can be OK, despite this terrible disease, and your efforts to learn, adapt, accept, and survive can provide the best possible safe passage for your LO.
That is the tragic reality until a cure is identified. In the meantime, this forum is the best thing our diagnosing physician has ever advised for my DH, aside from excellent medical care and responsive teamwork.
We are just now entering the final Stage 7 of his disease and if not for the shared wisdom and support here I would have lost all hope and possibly my mind in the last 5+ years of the daily grind of dementia caregiving. Buckle up. You are not alone, and you can survive your LO's disease while helping him through it.
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Thank you everyone for your encouraging words of wisdom.
I have to admit that I did have a meltdown today while talking to my sister. Maybe I'm feeling sorry for myself, but when ever I talk to family or friends they ask how my DH is. Don't get me wrong I love that they ask. But no one asks how I'm doing. And honestly I'm not doing well. Until someone experiences this ugly thing , they will never know how it feels to watch the love of your life slowly slip away.
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@Bugj My mom was caregiver for my dad who had a neurological condition. She told me that in all the visits to his doctors no one ever asked how she was doing. That really bothered her. He’s been gone for many years but she still mentions that from time to time.
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Welcome to the forum! Overwhelmed is normal reaction! The diagnosis is a shock and the significance even more so. When I’m in that place, I try to step back and just focus on the immediate. This day, this moment. It’s a balance between planning for the long range needs while focusing on the “now”. Vent to those who are safe. Regroup. Then get back in the fray. Watch your emotional levels and be conscious of when you’re edging to close to the “cliff”. Like a boxing match. Step into corner, rest a bit, then jump back in. It’s the only way you’ll make the long haul.
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I was overwhelmed to when my husband was diagnosed with VD year ago. All the planning for the future. POA and stuff is a lot to think about.
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Well we made it through to the NEW YEAR. My DH said to me that in the past week he feels like there has been a decline in his memory. That things just aren't clicking. I watched him trying to dial a phone number, and he couldn't do it. It's like the thoughts couldn't get from his brain to his finger tips. That was so painful for me see.
My next question is, we are thinking about moving out to the My family farm. If anyone has moved a loved one, how did it go, how did they adjust? Or is it just a bad idea?
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Hello - my husband and I moved right before his diagnosis. Honestly, the move was rough and highlighted many symptoms (long story). My recommendation is to move to where you need to be. Will you have more support after the move? Will it be better for you? As your husband progresses, it's going to be hard regardless of where you live. Try to put yourself in the best possible place and situation so that you can care for your husband AND yourself. Sending you positivity.
I also wanted to share that I set up an area in the groups section for new caregivers. I've been gathering resources and helpful posts that were useful to me as I started on this journey.
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Bugj, welcome to the forum. Sorry you need it, but it's the best.
I'd just like to say that if he's stage 4/5, you can have many good memories to make. It's not all terrible, but you have to focus on the good things you still have, and forget about the bad. Do that as much as possible, and it will help.
Now on to moving........some people have moved quite a distance to be close to family so they can get a lot of help. Sometimes this works, but most of the time people are disappointed with what the reality is. The help they expected usually does not pan out the way they thought.
And the effects it might have on a pwd is really not known until the move is made. You really should ask yourself what you expect from a move. There are a lot of things to consider, including the resources available at the potential new location. Quality medical care is high on the list to consider. Would this be a place you would want to spend the rest of your life when your caregiving duties are done? And there are many, many other things to consider.
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Not taking care of my own health. Since my husband was diagnosed. Is having the consequences that everyone warned me about.
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After being gone for a while I've finally found a quiet day to catch up. I'll fill everyone in on what's going on with my DH. We have noticed some more slight decline. About 5 months ago he was tested with the MoCA test and scored 17/30, two weeks ago he was tested again and scored 13/30. I know he went from mild impairment to moderate impairment. But what does that mean? We are moving the end of March, and he said that he was excited for that move. That surprised me.
We see the neurologist on March , hopefully he shed more light on what's to come.
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I can relate. I am always wondering if I'm doing the right thing or the wrong thing.
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I used to wonder that too until I discovered that no matter what choice I made I was screwed. The best choice is the one that makes YOU less screwed and the one that you can more easily live with. The choice that will make you and your spouse most comfortable as a whole.
Hang out here. Join a support group. Share stories. Learn about the experiences others have had. Then trust your gut. You’ll know what to do. But remember…you’ll still be…???
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Hi BugJ.
As you mentioned, no one will ever know what it feels like to watch your LO slip into their own world and there is absolutely nothing you can do.
I've always been a fix-it person. Anything goes wrong around the house, automotive, electronics, etc., I can usually fix or figure it out. With Dementia-NOPE! There is nothing I can do for my DW of 40 years. I feel like I'm letting her down.
Do you know if you're doing the right thing caring for a LO? I wonder that every day. I have to rely on the feedback of her Dr's. When the visit summaries read "the tests look good" or "she looks healthy and well cared for", I take that as I might be doing something right. And, you have to rely on what you think is right.
I can't say things will get better. But, when your LO has good days-cherish them. That's may be the closest you get to see them as they were. Those good days get few and far between.
I certainly wish you the best. There is a lot of good information here and a lot of very helpful people who are willing to share their knowledge.
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This blog has been helpful for me to understand what I am up against. Early mod diagnosis but I can see it now eating away past 8 years or so. My wife is only 53. Pet can, mri, cat SCAN and diagnosis confirm Alzheimer’s stage 3 or so. So beautiful inside and out. Professional model, radiologist, 3 college degrees. Most beautiful woman in the world to me.
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Bugj,
Hello! I am new to the group also as of last week. My DH was diagnosed with MCI 5 years ago and last summer diagnosed with dementia. Talk about falling into the deep end; I was treading water - so tired -during Fall & Winter. I am on a learning curve from this group. I have a strong faith, but I figured no sense in trying to reinvent the wheel - others have been through this. I needed practical knowledge, common sense methods. (and my youngest daughter suggested to me find a support group- lol.)
I have already been able to put into practice some tidbits & found I had actually did a few correctly before I joined the group. Lol. I tell myself, "baby steps. deep breaths." Today was a rough day for me, but not the worse I have had. I did not split hairs with what was already wrong with the day at noon, and then at 5 p.m. or at 9. I will have to fix it tomorrow anyway. So, I actually watched "Rock the Block" decor channel and took some deep breaths.
Knowing that there is a group & a place to go for questions or know there are others that struggle, that have been there, that have insight, etc. makes me feel better and I am thankful for the forum.
We can get through this. - Jerrianne
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Hello. You do the best you can do, and do it with love. And that's the right thing. No one else's opinions matter. This might go on for several years. It has taken me a very long time to feel that I did the best I could with the knowledge and resources I had. Always, always, I give him all my love and that keeps me going.
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Hello Love, I'm the caregiver to my wife, who was diagnosed with ALZ last year. Would really like to have a Support group local I can join. It would be Grand to speak to folks going through the same issues. I live in the Dallas Fort Worth area. Peace be with you…💐
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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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