Follow
Share

He is physically very healthy, 78 years old and has been placed on vitamin B1 and Aricept 5 mg, to increase to 10 mg in a couple of weeks. He is better at times than others. I am only beginning how to learn to be a caregiver until is very overwhelming right now as I wonder about so many things, mainly who is suffering worse, hi or me? Thanks

This question has been closed for answers. Ask a New Question.

46 Answers

Most
Helpful Newest
First Oldest
First
1 2
I have been going through this with my wife. I cared for her as long as I could and then came to the realization that I was going downhill fast in terms of my own health. Ultimately I said to my sons: "I can't do it anymore!". This was a terribly difficult decision and involved placing my wife in a nursing home. The care there is 100% good; she is getting social interaction and excellent meals. That was nearly a year ago. I have cried buckets and still fight the "guilt trip" thing but, I know it is best. Now I can visit, almost daily, we can go out to church together and to other places. The biggest thing I know is that she is being well cared for. It is still hard.
Helpful Answer (2)
Report
GrammyM - Nobody ever conceives what "for better or worse" might actually entail. It's probably a good thing!

You are going to have to take steps, regardless of what your husband says he will do. My mother threatened to run around naked, pee on the floor, spit, hit, fight. She actually did some of these things, but it was in a facility, not my home thankfully.

You MUST understand that you have to look out for you first, so you are able to be a good caregiver to him. This is not selfishness, it's coping.

You need an in-home assessment to define what your needs are now, and to plan ahead. The doctor is talking out of his hat by saying one day a week. He has no idea what you are really doing. Some older doctors just assume the little woman is going to suck up this effort and it's our job to bear it with a smile.
I say "manure" to that.

Call your area agency on aging. Request an in-home assessment for services. You will need night care so you can sleep. You will need help moving him around and bathing him. If not today, it will be soon so get the train moving.

This is a marathon, not a sprint, so take help, conserve your energy for the long haul, and don't be shy to do what must be done.
Helpful Answer (0)
Report
GrammyM,
The easiest way is to email the alz.org and ask them whether they gave support group online or by tele-Conferencing. Another way is to email them using their contact us link and ask them questions concerning your love one's condition. I emailed the theaftd organizational website asking them questions on medication and support groups on how to handle my mother-in-law who had frontal temporal dementia. They responded within 3 days with a very detail answer as well as provided me with information on how to join their teleconferencing user group.
I just enlisted in a Telephone conference support group for FTD. There are so many of us that I am on the waiting list. The way it works is the group meets once a month on telephone for 1 to 1 1/2 hour. There are 12 participants and a facilitator. The participants share their experience and ask questions on how they can better care their love one.
I think this may alleviate your concern of leaving your husband alone in the house.
Helpful Answer (1)
Report
Please advise me, How Does a Caregiver attend Support Groups When They are The Lone Caregiver?
I read frequently about attending this support group, that support group, etc. My husband screams and shrieks when I leave to go grocery shopping. How does one attend these suggested support groups? Do they leave their Alzheimer suffering spouse home alone? Or does the support group facility provide adult sitting service while caregivers attends seminars and discussion groups? Honestly, I have no idea how I could do this and yet, after 9 years of sole caregiving...I need the support. Also, this week I checked on local facilities as to whether there is short term respite offered. Mostly for information. Every facility I called are not only filled to capacity but has a long wait list! And the minimum stay is 2 weeks for a patient. So...if anyone reading this is looking for an assisted living facility to provide care for a dementia patient while going on vacation...it is nearly impossible. Don't know what people do without an extended family. I'm sunk. Doctor suggested having a caregiver come in once a week to give me a break. Husband said he would spit and throw anyone out that tries coming into our house. Doctor gave up trying to reason and rationalize with husband. And, I must be careful having a weak heart and acid reflux flare-up, etc. So, back to these support facilities...how do all these caregivers attend? Thank you for any suggestions and answers.
Helpful Answer (0)
Report
God bless you!!!! But plz take care of yourself! Caregiving is very hard on the caregiver!
Helpful Answer (0)
Report
This site helps me so much; my mom has Alzheimers and my dad is slowly sliding into dementia. They both have many other medical conditions that add to their care; recently my mom was diagnosed with an abdominal aneurysm and my dad had another bout with heart failure (with a hospital stay of about 4 days)...I know I should be getting additional help but I am so protective of them that I just can't let go right now. I don't trust anyone else to take care of them...but yet I can't spend 24/7 with them. I know I'm just being stubborn, but even tho it is draining me, I just can't . At least not right now...I know this may sound stupid to some people, but I don't trust anyone to take care of them in the way they know, at least for the time that they stilll 'know'...so this is my own personal battle, I know, but I do know deep down that I will have to enlist someone elses' help soon..I have an older brother but he is 'slow' but he does take them to the grocery store and Walgreens and hardware store at nite so that helps ....but all the responsibilities , dr appts, financial/paying bills, etc fall on me....reading other people's feelings and situations help alot, so thank you all for taking a few minutes to read mine...I appreciate it.
Helpful Answer (0)
Report
I never had time to get on the computer while taking care of my mom so never found this site until after she passed. I did look up some things like what her diagnosis actually was and the medicines she was given. Most of the other things I just adjusted until I found something that worked. Had a known that a site like this existed and there were SI many resources available, I probably would have been on the computer more. Take one day at a time that is all you can do.
Helpful Answer (1)
Report
A common question here is along the lines of "is it too soon to ___ ?"
If you find yourself wondering that on any particular topic, there's a reason.

Is it too soon to get help at home for ADLs?
Is it too soon to use a daycare/club?
Is it too soon to use a night sitting service?
Is it too soon to talk to the doctor about sleep/insomnia problems?
Is it too soon to treat anxiety and behavioral disorders?
Is it too soon for me to run away and hide under a mountain for a week?
Is it too soon for me to be this exhausted and stressed out?

The fact the question has popped up for you means that it's not too soon and it probably won't be much longer before "too soon" turns into "long overdue".

A lot of very brave and strong caregivers have deluded themselves about reality with the "oh it's got to be too soon for ___". If you feel that way, it's normal. We all do it. But don't get stuck there and end up with a crisis on your hands that forces changes without choices.
Helpful Answer (2)
Report
LvRLabs2 Thanks for the heads up about getting info from a local day care center. I will drop in this week some time to get an introduction as to what they offer.
Helpful Answer (0)
Report
I think that one thing that I learned is that I was not able to fix certain things. No matter how I reminded her, wrote it down for her or told her, she would not be able to accept or recall something. I had to accept that she would not remember and that was okay. You have to be able to endure your loved one repeating something 30 times a minute. It's not easy.

While there are many challenges, keep in mind that certain things that are so difficult, often change and give you a break. Constant pacing can be very frustrating for the family, but later they stop doing that. The downside is they may no longer be able to walk.

While there are stages, things can change fast. I would follow the advice above and make plans now. There is no shame in needing help. Even placement is very common. To me, dementia is not so much about someone forgetting things. It's more about unusual and often destructive behavior that is difficult to control. It's also about physical inabilities that require much physical strength to assist the person.

I look forward to seeing you on these boards. Good luck.
Helpful Answer (0)
Report
LuvR......there is no right or wrong way of doing things because each situation is different. You are doing it your way and you will know when the time comes to start doing things. It's good that you are starting the process though and getting yourself familiar with steps to do. I had a nightmare experience as well with my mom and I wouldn't wish that on anyone. It was worse than my dad having his heart attack and coding in my sister's car on the way to the hospital. Fortunately, ER was able to bring him back. We all just do the best we can at every turn. That's all our loved ones want us to do for them and what I want my son to do for me if he is able (hopefully that won't be for a long time :). Good Luck and God Bless....
Helpful Answer (2)
Report
Bhjos34...I just read your post. Is the diagnosis for your husband recent also like mine was? I feel like you said, uncertainty on what to do first, so I do very little. There is so much out there. And that is good, and I am thankful, but I can't sit and read all day, nor can any caregiver. The hospital provided sources of help for me, so yesterday I called both a day care adult center and a home visiting agency to inquire and got answers that I can store for use as needed. It did lighten my load a bit, but I feel I don't want to "play all my aces" too soon, so I will hold off for now, but keep them in mind.

I am finding this new role confusing as I don't know if I am handling it correctly, but the warning of self-care for the caregiver is something I do want to keep in mind, not selfishly, but to be able to handle things as they occur.

We had a nightmare of an experience that brought us to the hospital and getting the diagnosis...one that I never want to repeat again...so I need to learn all I can to be the caregiver I need to be. Enough rambling, but it is a blessing to have a place to ramble right now!
Helpful Answer (2)
Report
Just a comment to one of the posts about classes on Alzheimers. Our local Assisted living/Alzheimers facility gives seminars. These Seminars are accredited. Check around and see if maybe a Facility near u does the same think.
Helpful Answer (1)
Report
This discussion seems to have originated just for me. I am the sole caregiver for my husband. I am very uncertain what to do first, so I do very little. I guess getting things in order financially should come first and then starting to clean out the house of useless stuff in advance of a move to a facility. As to handling the different aspects of his dementia, I try to keep abreast and handle each and every incident as it occurs, not always too successfully. I worry that I won't be able to cope as he gets worse.
Helpful Answer (4)
Report
My advice is a Caregiver's support group. You can learn quite a bit from the group and most caregivers are willing to share their experience and caregiving tips. God bless you as you travel the Alzheimer's maze with your spouse. It will not be easy. Remember to meet him wherever his stage in life is and cherish the precious moments that you have with him.
Helpful Answer (0)
Report
My heart goes out to you. It's a long hard journey your undertaking every emotion and some you didn't even know you had will be shaken to it's core and you will be brought to your knees in despair. Support systems dissipate not because of you personally it's human nature to back away from what we fear it happens in illness, widowhood and divorce. Start even in small ways to build a new life for yourself join a support group, take a dance lesson anything that can distract you for a hour a week. And, remember always that this too shall pass. Unimaginable as that may seem.
Helpful Answer (0)
Report
My boyfriend and I are both 60 years old and are disabled with back problems and fibromyalgia. He got hurt in the Navy during the Vietnam War and I when working as a nurse. He was able to work until 8 years ago and I worked until 5 years ago. We moved to FL almost 2 years ago hoping we would get some relief from the chronic pain from the Northeast winters. I am also POA for my 88 year old godmother, who has been like my mother my whole life. She was never married and has very little to do with her own family. There was no way when we decided to move that I was going to leave her basically by herself in PA, so we now all live together and I have a private duty home nurse come in each day to bathe, dress her and do the things I cannot physically do. She was just diagnosed with early dementia not long ago, but I can see already how she is changing. Thank God, the nurse can stay with her a few days a week for the morning and afternoon, so we can get out and just do the things we enjoy to do together, and that is if we both feel good enough to do anything. Sometimes she will just stay with her and make her lunch and sit with her if we are not feeling well and need to rest. I thank God everyday we have this person, and my godmother can afford this. I cannot stand the thought of having to put her into a nursing home, as I know how those places are, but I also cannot allow our own health to get worse. I will continue to have the nurse and possibly in the future another nurse to come in for the nights if needed, but I can say without a doubt, this is the hardest thing I have ever had to do! I took care of my father for five years before he passed away in 2006, but his mind was sharp all the way to the end. Taking care of someone with dementia/alzheimers is very demanding and grueling! Try to establish from the beginning an understanding and educate friends and family of not only what the person with the disease will need, but the support you will need also! Know that you cannot possibly do this all on your own and do not feel guilty to ask for help or hire someone (if you can afford), to come in to help you!! Use this website as a sound board not only to get information and support, but to vent your frustrations and feelings, otherwise there will be days that you will feel so overwhelmed and all you want to do is give up! Everyday, I look at my mom, and I think back on all our memories together and how she was always there for me, standing strong and giving me unconditional love! Those memories are what keeps me strong and keeps me going! To all caregivers who deal everyday with this dreaded disease, I send my healing thoughts and prayers!
Helpful Answer (0)
Report
Please go to the website of your local alzhimers assoc. Look for a support group in your area and go. It is so helpful to sit and talk with people going through the same thing as you. You learn right away you are not alone. Also the alzhimers assoc has counselor avaliable 24/7 when something happens and you just need to talk to someone that understands. I know the morning my dad did not know who i was i was crushed and needed someone. They listen to me as i cried and then talked about other things I going through as a caregiver. There are free resources available, please use them because you need to take care of your emotional health just as much as your physical health.
Helpful Answer (0)
Report
I feel for you, it's a tough road to travel. I still haven't learned how to handle the parent issue. My husband always wants to see his Mother, who had been dead for more than 30 yrs. Also, he does that" I want to go home" almost every day.
I have recently tried saying "Alright, go ahead, but, I'll miss you" He then will go to the door, turn around and say "I can't do that" Everything is so hard, but, I can't put him in a home, so...................
Helpful Answer (0)
Report
Yes you both are suffering. It has been May 2010 since my husband was doctor said it was dementia. My husband keep working I- kept things going till Nov 2010 his employer let him go. Shock into reality! Life changed this man I knew has become depended on me his wife. My husband quite independent man reading Mr. Fit-it conversational person All I miss about him. The meds help and even now he still tries but for me yes it is really lonely so I hold on the the moments when he has GOOD DAYS!! and you focused on that and the memories I made a memories room for him and myself I put our pictures on the bedroom door( favorite music) anything that will made it easy on him and me! He is my Love my husband until the last day I will be with him. You will get all the emotions during the day and night tears all of it but be strong and take care of yourself.
Helpful Answer (0)
Report
First of all B1 and Aricept will not do a d*mn thing for dementia. It is a terminal illness and his behaviors will change all the time. The best you can do is learn as much as you can about this disease, and if you feel you cannot handle caregiving, then place him. Not everyone can handle this disease, but do not think I will give you any sympathy because you are being inconvenienced. Having lost one's memory has got to be the most devastating illness, and your husband is suffering in silence, but he cannot remember much, and pretty soon you will be a distant memory. I've been dealing with my husband's illness for eleven years and will continue as long as he has a breath. No one said life was easy...
Helpful Answer (0)
Report
What a great question. I am sure I speak for many on here that being tired is an ongoing thing as a caregiver. This question is SO great that I think I want to dwell on the question, read some of the answers and be back at ya.
Helpful Answer (0)
Report
I worked in a Alzheimer's unit for seven years I truly loved it but my heart did go out to the caregivers who had no support prior to reaching out to a facility everyone has given excellent advice plz get some rest and me time! God Bless you
Helpful Answer (0)
Report
Boy, everyone of these answers what was I was going to say. If I hadn't gone through this with my grandmother I would have been lost going through it with my mom. Heck still am. She's well on her 12 year with this disease and is failing. Doesn't talk, wheelchair bound but still knows me, I hope. It's been hard to watch and go through and as I was taught early on it is a true Journey not a race. Don't be scared, just get your ducks in a row and as mentioned before be educated. Some weeks will be good, others....eh. Learn to pick your battles. Not everything can be fixed or go the way you want it to and you just have to roll with it. Don't correct, you won't win. Their brains just don't function anymore and personalities change. A sweet person for all their lives might turn angry and hostile and vice versa. Sometimes they won't change just depends on chemistry in the brain. As far as friends go, they are not disappearing to be rude or hurtful. If they have never gone through things like this it is scary to see someone they once knew not understand a simple question or be able to communicate anymore. They just don't get it. Ask for their help though so they can be educated. After all, it could happen to them someday with a loved one and it could help them seeing and learning what you are going through. DON'T give up your life or your hobbies. It seem like you don't have time anymore but that's why you need Adult daycare, day nurse, sitter, etc. I didn't do this and I really believe it has taken my health which I'm trying to get back. My mom is in a facility and I still take care of my dad. He lives in a retirement facility on his own but there are still plenty of drs. appts. and financial issues to take care of. Again, like others have said, this site is wonderful to vent, ask questions and learn new things. Wish I had found it a lot sooner. Good Luck and God Bless.
Helpful Answer (1)
Report
I wouldn't say your husband is suffering but when he is having his good days he will feel frustrated and sad because he is aware of his memory loss. On the brighter side of things when he is deep in his dementia he will not be. Small words of advise try not to sweat the small mistakes he makes.
Helpful Answer (0)
Report
Read "Creating Moments of Joy" by Jolene Brackey. It gives so much help with how to respond - like when they ask, "Where's mom?" They ask because they are in a memory time when she was alive, so an answer of "she is resting" (not dead) gives them satisfaction. Leaving those in a care center, use a phrase that does not mention "going home" which just makes them want to go with. There is so much helpful advice in this book on what to do in many different situations.
Helpful Answer (1)
Report
A must read "Understanding the experience of Dementia" free read by Jennifer Ghent-Fuller. I first saw it on Alzheimer web. My husband 84 Alz/dementia since 07 puts 100 piece puzzles together when awake & I put them away each morn & he doesn't remember he did them & will do them again & loves it. He doesn't read or watch TV. Rearranges things which I leave them then in morn put back where they belong. He doesn't remember. Keep calm gives calmer spouse & life. Give extra time for everything he is involved with, dressing, brushing teeth, showering, eating etc. If you can afford get someone to come in for even an hr. I felt free the first time. This site is the best..Read some you think don't apply to you as they may later.
Helpful Answer (3)
Report
I am wondering about POA. I took my mom to the Dr. because she has his right shoulder injury that she received since last year and she still experiences pain. She has gotten the injection earlier this year but the pain comes and goes here in June. Last Friday, I took her to get an MRI last Friday and she goes back this Wednesday. My concern is I am trying to get the house back into order and clean up to make things neat and organized and she is limited with this shoulder injury to do it herself, but she won't throw anything away. We are getting roaches on the front porch and I am finding rotten stuff in the kitchen. The house is just a wreck. I am wondering what to do. Her memory is still in tact, but I am noticing her difficulties with her remembering things is becoming increasingly difficult. Also, I tried to hire outside help because she is dependent on me for her driving her to her appointments. She refuses to take it. I am becoming very depressed because I feel trapped. I want to work outside the home but I cannot leave her by herself. I do not have POA because we found out that she has already taken two competency test and her Neuropsychologist said that it would cost her 1500 to 1700 out of pocket to take a test to meet the lawyers request to see if my mom can handle her finances, healthcare decisions-, and to execute a will and trust. My mom said no. Our lawyer is willing to meet with us both to determine my mother's expectations with how she wants me to handle her finances. Truth be told she needs to spend money on extra help for her in the home and she won't do that . i feel she needs to be in Assisted living where her needs can be met more adequately but she holds that decision. As a daughter what recourse do I have at this point.
Helpful Answer (0)
Report
I cared for my father with vascular dementia and even though most of his friends did not come to see him I will tell you that a few people never abandoned him. That was his sister, his family, and a couple of friends from his social groups. It may feel like every one is gone, but I am sure that there are people he knows that would still be his friend. I know that Senior Corp or similar in home agency that does companionship would make a new friendship. Keep up your friendships and be open to making new friendships because they are there. Also, the ALz Assoc, in Virginia Beach is offering a program for spouses called EASE. Check into the Alz Associ. where you live to see what classes they are offering for spouses and on the website their is a lot of good training tools. Most importantly love your spouse and find ways to bring him joy. I am helping my mom who has early dementia and she and I found that during her Therapy because her shoulder is injured that we make it fun and we sing uplifting songs like the hokie pokie and on eagle's wings. She and I do arm exercises together with these songs. Find a way to have fun together every day.
Helpful Answer (1)
Report
LuvRLabs2, forgot one thing. I recently went through an online Caregiver course sponsored by Rush Hospital in Chicago. I was able to get some great pointers from the class. Check your local hospital's Alzheimer org. they probably offer some great things including support groups.
Helpful Answer (0)
Report
1 2
This question has been closed for answers. Ask a New Question.

Recent Questions


Popular Questions


Related Questions

Ask a Question
Subscribe to
Our Newsletter