Very anxious need advise

Debra

Hi I am new to the group and caring for my husband who is in the early stages of alzheimers almost 2 years. He is rational and conversational and still can do a lot but his short term memory is very bad not really there. I can still go out if I leave messages around the house about where I am, and he can use his cell phone to call me. He does not go out, only with me, and usually goes on his computer when I go out. I am feeling so scared and its hard to know what to do and decide what we need and when. The family has abandoned us pretty much. Its hard to know if I can leave him for short periods to food shop et. I need some respite too and just got over cancer and caring for my Mom with the same issue. Anyone out there dealing with these same questions. The doctor is not much help when it comes to these decisions. I am so alone in this and more afraid of doing the wrong thing for him. Thank you so much.

M1

Hi debra and welcome to the forum. There are some things about early disease that are just as hard as the later issues, because it's so hard to know how much independence to foster/encourage vs. when you need to step in for safety's sake. The decision about leaving him alone is quite hard. I think you have to judge whether he would know what to do in an emergency, and what trouble he could get into while you're gone. For instance: on the computer. and the telephone, is he susceptible to scammers? That's a bit of a worry. I came home one time to find my partner on the phone with someone from "Microsoft" and she was just about to give him remote access to her computer when I convinced her to hang up. Was clearly a scam. In fact I wasn't sure whether she had actually given him access, so that was the end of that hard drive and in fact pretty much the end of all computer use for her. There is another frequent poster whose father day traded away $350,000 before computer use was terminated. And others with similar stories.

I would generally think that if you are starting to ask the question about whether it's safe to leave him alone, it's probably not. Good luck, this is a helpful forum and I hope you will find some of the support you need.

Debra

Thank you so much it is so difficult. You are right, if I am wondering about leaving him alone I am probably going to have to stop doing that. It is such a difficult decision and I am struggling so hard with it because it means me staying at home and the huge task of finding a caregiver that may be able to come in when needed.

thank you for answering me, so sorry for what you are dealing with, it was kind of you to take the time to answer. I am quite alone in this, and am happy and look forward to hearing from members of this group.

M1

I'm sure you'll hear from others too! Posting is down somewhat this week as everyone adjusts to the new format (I'm sure you've noticed the comments) but be patient. This forum has kept me sane and supported through some of the most difficult years of my life, since joining August 2020. I had never participated in any other online group and don't participate in any others. but I wouldn't even want to try without this group, for the foreseeable future. It is a very difficult road--and there are a number of us here who don't have many family/friends available in person, pandemic restrcitions notwithstanding. Makes this group all the more important. Read a lot and post a lot and you will feel somewhat better, I promise.

BTW just noticed on your other thread that you are in the Boston area...I lived in Brookline from '85-'90 and still miss it. My daugther was born there. Happy times for me. Could see Fenway out my back door. Go Sox.

Josie in Podunk

Dear Debra…

Welcome. This is one of those places where we say we’re sorry you need to be here, but we are glad you found us…because both are true.

It is often the case that family and friends seem to fall away or at very least keep themselves at arms length. They don’t know what to do or how to help…and, some have zero inclination to learn. So, we muddle along on our own, begin to search for resources, and hope the day doesn’t come too soon when we need them.

Drs can be hit and miss it seems. In reality they don’t have answers any more than we do. They have a list of protocols, meds, and possible therapies that they throw out to see what sticks. What works for one may not work for another. Our GP was great with the testing that needed doing and explaining why. Unfortunately, none of them gave us a definite diagnosis so we are left with Mild to Moderate Cognitive impairment of Unknown Cause. Beyond that he prescribed Aricept until things begin to change and to look for peer support, which brought me here 2 years ago.

So, again, we are on our own…and, that is where this forum is so valuable. Warriors in the field, as it were. So much to be learned from these folks. Mr. And I don’t need much right now, but down the road that they have trod before me much will come in handy. And, you can ask about ANYTHING cuz someone has been there and done that and can give you things to try for your love…and it will be given with love, respect and care.

so, welcome and may you find things and people here who are helpful to you on this journey.

Love, Josie

Debra

Hi Josie,

Thank you for your thoughtful words. I am mostly afraid and confused about decisions and what my husband needs. He does a lot on his own but the short term memory is gone pretty much. He makes alot of sense still and is conversational. My biggest issue is my own health, I have a lot of anxiety mostly over what to do now.

He dresses himself and reads a lot too. He can't drive anymore. Is anyone out there experiencing the same stage? My husband is relatively happy within his issues still does Yoga but I have to prompt him about everything all day long. I really don't want to leave him alone although nothing has happened yet. I face hiring a caregiver to come in so I can go out but I don't know where to start. I am afraid to do this don't know why it could help us. I don't understand my own feelings lately. I need to do some things to make this easier on me.

I haven't been able to do my work I am an artist, something is stopping me from thinking there could be happiness again even though we are going through this. My Mom died of dementia so I do know about this but my Husband's problems are unlike hers. How do I approach a caregiver. Our senior center has available respite workers. But I am just having such a hard time doing it or even making the call. IF anyone is experiencing this would love to hear how they are working through it.

mrahope

FWIW, I am almost at the same place you are. My DH has a short term memory that seems to have quit functioning for the most part. He can't (I won't allow him to) drive anymore and he is angry and upset about it periodically. This is our second week having a caregiver come in for 3 afternoons a week. Finding a caregiver wasn't all that hard once I decided to do it. I don't know why that was so hard, but in talking to my counselor (another intervention for yourself that I highly recommend), she said that maybe it was so hard because it made me face the fact that the husband I knew is gone and will never be back. This resonated with me, so I wanted to share it with you. Welcome to this place where folks really "get it" and are willing to lend a hand.

toolbeltexpert

Debra your concern about your own health is very valid. Taking care of you is as important as you will become increasingly hus support system. If you have seen or watched any videos I always recommend Teepa Snow and Ed highly recommends careblazers. I learned so much about what not to do and with practice was able to keep my dw home. She has memory care for 8 months now. I was unable to keep her safe from herself. Our journey is in the 13 yr. Many of those early years were very good we still did lots together, but like you I increasingly had to support her. First it was checking account, driving,ect. I date my wife's Alzheimers by the things I first noticed. I thought it was a hearing problem,you can't remember if you didn't hear. Turns out that was the real early stuff. I am originally from Worcester and left in 93 for a quiet country life in Tennessee. Now that my dw is gone I moved on the outskirts of a very small town,they don't have a red light. But my home is so quiet. I say this alot I hate Alzheimers disease.

Keep posting and reading and do get some respite starting that early might have helped me.

Stewart

Denise1847

Dear Debra,

Welcome and sorry you have had to join us. I would suggest that you find a way to disconnect the computer from the wifi if you need to go out (that is, if your husband would not know how to reconnect it). There is a difference between short-term memory problems and executive function problems. At first, my husband only had the short-term memory issues but then he lost his judgement and abilities to problem solve. If your DH is having executive function problems, then it becomes a real risk to leave him. You mentioned that family has abandoned you. I felt like that too, but I didn't ask them for help so they thought all was well. If you haven't asked them for help yet, please consider it. It is difficult to ask but people just don't know unless you tell them. I would suggest you read the 36 Hour Day. At least get it and use it as a resource (it is a huge book). It is important you take care of yourself. You need to get out, socialize, walk, read, exercise, learn about the disease (information is power and you will find through understanding that you won't feel so overwhelmed.) Go for counseling. There is great wisdom in the mantra, "one day at a time." I have learned not to look back at what was or what he used to be like. While I have a plan for the finances, POA etc., I don't focus very much on the future because it will cause too much anxiety when I really don't know what the future will be. Try to live for the day, making it the best you can. I have great faith in God so I pray and find comfort in it. I wish I could offer more.

Palmetto Peg

I am in a similar situation - my DH has been diagnosed with moderate cognitive impairment, and has almost no short term memory. I thought I could leave him alone until I came home and found he had left the burner on the stove lit. Now, I am not so sure. I did try to impress upon him the danger, and he nodded in agreement and said it would never happen again, but I know better. We have agreed that he will no longer use the stove, and if he does, I will get get a lock for it. He still drives, but only to the golf course and back - and the golf course is literally 2 blocks away. I do all of the other driving, and next year I will be driving him to golf, too. That is the only time he leaves the house without me. I have family in the state, but not nearby. We visit them and they visit us, but on a day to day basis I am alone. Be very careful about leaving him alone, and I agree completely with the reminders that executive function is not the same as short term memory. If he has problems with that, he can't stay alone. I feel your pain about needing a caregiver, but if you start now hopefully you will find the right person. Advice here has been to tell your DH that the help is for you - and since you are recovering from cancer, you should have help! Take care of yourself! This is a long road and we will have to try to stay strong. Hugs!!!

Ed1937

Debra, you are not likely to get any good advice about caregiving from a doctor unless he/she has been a caregiver. The people on this forum are lifesavers, even if they don't know it. Your questions will be answered here.

I'm sorry you are dealing with a cancer scare, but you now need to try to keep stress to the minimum. So for you and everyone else here, please ask for help, even if you are uncomfortable doing that. If someone offers help, don't refuse it.

Jo C.

Hello Debra; you have received some very good input. It is a scary place to find oneself and we all must climb the rungs of the learning ladder when new and at our own pace; that is part of the process. It takes time to develop a good action plan and get our ducks in a row over time.

A very nice service that comes with no fee whatsoever, is the Alzheimer's Assn. 24 Hour Helpline that is available 365 days a year - it can be reached at (800) 272-3900. If you call, ask to be transferred to a Care Consultant. As said there is no fee for this. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are highly supportive even if all we want to do is let our feelings out and talk; they have information and can often assist us with our problem solving. Having the 24 hour access can be helpful if we have a Loved One (LO) who tunes into our conversations.

It is a good idea to begin to try and put a support team together as much as possible. If you belong to a place of worship, there are often excellent helpful dynamics once one's needs are expressed. If family has not been aware of your concerns, it is good to make contact and be open; if you have friends or neighbors who you have been close to, they too can be helpful in a pinch. Hiring someone experienced to be a "friend" to your husband when you need to be out would be an asset to have. Some will do this as needed, others want to have four hours a day several days a week, it depends on the person. Sometimes churches and senior centers have knowledge of individuals who would be willing to accommodate companion care as the needs arise. I got someone from our church and introduced the individual as a "friend" and it worked very well.

It is important that you begin to plan for this in whatever way you can; as mentioned, how would your husband do in an emergency if there was a fire, or a stove issue, or if a stranger comes to the door, etc. as mentioned above by others. This is what we must begin to plan around - those possibilities as our LOs have lost much of the logic and judgment that was present prior to the onset of their dementia.

You are a very loving and caring person and are also very wise in being able to feel your own needs amongst all the care dynamics; it is good that you are going to find ways to deal with this.

Please do know that we are all here in ongoing support of one another and that now includes you too.

Keep contact and no topic is too strange or too mild or too anything . . . we share all and no judgment. We are very glad you have found us.

J.

Joydean

Debra welcome. If you are considering getting a caregiver to come in once in a while I strongly suggest you start doing it now. I say this because I waited a little too long before I did. I was his 24/7 caregiver and by then he had become so dependent on me for everything that it took a while for him to get used to someone else being here. It honestly got to the point that if I got out of his sight he would start getting paranoid. I couldn’t even go to the bathroom without him looking for me. So I do recommend that maybe you start with someone coming maybe once a week then gradually add more time. This will give you some time for you and hopefully you can get back to your painting. Please be kind to yourself because you matter also. Enjoy the time you have now.

Debra

Hi Everyone

Thank you so much for your kind support. I am trying to get someone for my husband from our local senior center. I am actually scared to meet someone, I don't know why I am usually a friendly person. My problem is my anxiety, I am just so afraid of what will happen in the future. I try to live one day at a time but it is very difficult because I never had to live this way before. I am just so scared every day I hope somehow I can get rid of that feeling of fear. I hope I can get someone to help us that will be good. Everyone tells me I need a break but I also hate leaving my husband and I just want to be with him. Yet I know I do need a break. He was always my rock and I love him dearly and now I feel so alone. He still is himself just doesn't remember things at all. Has anyone out there felt scared like this? I am usually such a strong person but I am just filled with anxiety daily. I just want to shake this feeling and be ok again. Any advise, has anyone been able to feel ok again. I need to be stronger and also be able to be happy again somehow.

Debra

Novice AD Partner-Ca

Debra I just wanted to offer my "me too" ness. I can't offer much more! - I'm in the very early days too. I have swung from wanting to run away, to being like you in that I don't want to be away from my DH who was diagnosed in mid-February with Younger Onset AD. I am still swinging between shock, denial... all the emotions are very strong, for me. I did go through a period where I was crying a lot, and could not sleep. I felt so lonely because my husband does not really seem mentally/intellectually able to engage with the whole thing, so I almost feel, ironically, that I am the one dealing with the emotional impacts, the grief etc. I would wake up at 2 - 3am with my thoughts running riot and an awful feeling of anxiety and dread, imagining all the awful things I was reading about happening to my man and I, it was just awful to imagine, and meanwhile he was sleeping soundly and keeping himself cheery and busy. And also the fear, the worry about what "could happen", the uncertainty about being too restrictive of his life, his independence, in the interests of safety, vs. being too loose and letting accidents and other bad things happen. Like your husband, mine is still pretty functional, just some memory/cognitive challenges - quite severe in some ways, negligible in others, and fluctuating, day to day, moment to moment. The horror I feel is for the future, not the present, and in dwelling on the worst aspects of the imagined future, I'm tainting the present. Working on that!

The best thing I have done so far is go away on a little trip with my husband last week, just a week, an apartment on the beach.

I'm not pretending that's any kind of long-term solution but it allowed us to get away from all the doom and gloom, somewhere sunny and safe, and we got some confidence that we can actually do things, our life is not over just yet, we just need to adjust a little bit, and we added some happy memories to this horrible period of our lives. It helped me to relax after the 6 month long diagnostic process/period. He ran on the beach, I read books by the pool. Is that an alternative "break" that you could have? - that does not involve being separated from your husband, so you can both relax and have some fun and pleasure? I was a bit afraid what would happen, but the worst thing was just that he was confused about what was happening when, and could not use the lift independently. Not a big problem, we just stayed calm and enjoyed ourselves. It was so successful I'm planning a second trip in three months' time.

It's great that you can accept help, I think that's really strong. I'm working on that myself!

Marta

Debra - I would strongly encourage you to talk to your PCP about starting medication for your anxiety - not Xanax or Ativan, as these can create dependence, but an SSRI like Prozac or Zoloft. Anxiety often goes hand in hand with depression, and the SSRIs treat both.

You should expect considerable relief of your anxiety, increasing ability to cope with your situation, and a reduction of the inertia that has kept you from reaching out for help and taking action.

btw I am a PCP, caring for residents with dementia, as well as their loved ones.

Marta

HappyDog

Can't quite figure out what is recent and what is a few months back so this may be out of place. Finally got the doctor to confirm early to mid stage 3 dementia for DW. She does OK so long as everything is "the same" and the routine doesn't vary. Can't deal with change or stress without "going off the rails" so I try to keep everything on an even keel. I am about the disable her car to avoid the argument about not driving since myself or a friend are happy to take her anywhere she needs to go. The biggest issue is that I live in a community where there is absolutely NO support groups or anything else for AD. I'm reading books and the internet to try and figure it out myself; fortunately, I have a fantastic dog willing to listen to me rant. I have retired and we have no social circle of any kind. Not what I had hoped for the "golden years"!

Ed1937

HappyDog, welcome to the forums, but sorry you need them. Here is a link to an excellent writing about understanding dementia. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

If there are no support groups in your area, the forums here should fill that need nicely. If you are looking for feedback, it is much better to start a new topic by clicking on the plus sign in the orange circle at the bottom of this page, then "new discussion". Posting on an ongoing thread will not get nearly as much traffic as a new topic (new discussion) will. I'm glad you found the forums, but you need to be active with them to get the most out of them. So post any concerns you might have on a new discussion to get the most out of it.

There are also excellent videos by Teepa Snow and Natalie Edmonds (Careblazers) on youtube. They can be very helpful too.

MN Chickadee

Debra, You might introduce a companion as a friend, someone from church, a nursing student, a cleaning lady, or whatever might fly. Slowly have them start doing more things around the house as your husband gets used to the person. We utilized adult day care for my mother, it was a life saver. It gave me and my dad some respite and he could take care of things around the house that upset my mother who had Alz, and it also gave her activities and socialization in ways she could manage. All activities were designed for a PWD. You talk a lot about anxiety about the future. Everyone is different, but I had tremendous anxiety until I took care of some things that kept me up at night. I met with the social worker at my local chapter of the Alzheimer's Assoication and made a plan. I researched day care and also long term care/memory care facilities. I toured them, selected a few, and put her on the wait list at 3 memory care facilities. They started to call every few months when rooms became available and I would say we weren't ready yet but knowing we had the option was a relief. And once we needed it we REALLY needed it and I was glad to have that work done. I knew we needed a Plan B and a Plan C in case something happened or changed. Some facilities do offer respite care where the PWD stays with them for a week or two. This could be an option if things are dire. You might also see about support groups in your area, either virtual or in person. These can be ways to get stuff off your chest with people who understand the journey and also get helpful advice. Best wishes. I know it's hard.

RCT

Hi….I am in the same boat so to speak….I do leave my husband alone while I go to class or see friends. He no longer has a credit card so a scammer can’t get him…he uses his laptop a lot….(I had one scare once and that is what prompted me to take away his cards) I also have a nanny cam so can check on him …He no longer drives and he doesn’t wander yet so for now I feel good about being away for short amounts of time. He goes to a memory class once a week for socialization and has a caregiver take him out once a week …both of those things help me. I also go to a local support group via Zoom..VERY helpful. It just took me time to figure it out..you will get there and as time goes by adjustments need to be made….we are here to help and support you