How do you know when you cannot take care of someone any longer?

After my mother's funeral and people came back to her house (which I had been in for an extended period), my daughter said I had to make coffee for all those people. I simply could not move another muscle and my daughter took over.

iamdave sounds like your moving ahead with great news! I hope you are spending some time meeting with this attorney (elder care attorney I hope?) o cover a bunch of these details. The info about this Medicaid program is fantastic and helps a ton but it isn't the end or answer to all your questions and needs. It spounds like there are several areas that need to be adressed, talked about and planned for along with contigency plans for each. It makes a lot of sense for you to plan for your care as well in the future should you have a major medical event or not but just get past the point of being able to care for yourself without some help. I think I read that you finally met with your kids, her kids and family to let them know what was going on with her, this should continue and yoiu should talk to them now about you and who might do what, who will you apoint POA and do it now etc. I may have missed it but enlist their help with your wife as well, this shoulkdn't have to fall on you completley just because you are her husband. You may direct and oversee, run things but that doesn't mean other family members who love her can't help and believe it or not they may want to, it might mean a lot to them to be included and be able to help. Who knows this might help her mood and behavior too. Like a child I think people with altered minds (dementia, aphasia, some of both) have a hightened sense of the tension or feelings of those around them and they react strongly to it. Perhaps some of her negative behaivior is heightened by the stress and tension you are feeling and under. I do not mean to say that you are being obvious about it or putting it on her just that those closest to us often react to or feel both posative and negative vibes, if you will, from the people we are living with and closest to. Our pets often feel this too and while our pets and often out partners usually react by giving more support and love a person with dementia or cognative/speech problems might not be capable of that, not strong enough themselves and the respond by echoing those negative feelings or feeling more insecure themselves without having any idea why. It's not a concious or self aware thing.

By sharing the load both practically and just verbally unloading, talking it through, letting it out with other family and friends it may ease both your load and hers. I also think the more family, so people she knows well and is comfortable with, participating in her care and having regular contact with her the better all around for her as well. My mom had a stroke in the spring of 2016 and while we were lucky, her motor function came back quickly and pretty much fully she is still struggling with aphasia and some apraxia, her speech in particular but there is certainly a cognitive component as well. I think she was developing some mild dementia anyway but there is no question about her cognitive skills being affected still and that includes bouts of anger that she has never had before. It comes often when she is anxious and or feeling like she is loosing control and when she gets that way she really has a way of digging her heals in. It's hard when your suddenly on the recieving end, doing something for her usually something she has been happy to have you doing and all of a sudden it all changes. Mom often starts making no sense because her words don't come out right and that of course makes it worse for her but she's really good at just saying no when that happens and just shutting the entire topic and conversation down. I know better and try hard to simply let things go when she does this but sometimes it catches me off guard or it's a time sensitive thing that we have been discussing for weeks and have a deadline or something so I find myself forgetting that she isn't really in control and it's coming from fear and engaging in the word wars with her which is exhausting and feels awful later as well as not accomplishing anything. It doesn't happen as much now as it was for a while and to some degree I think that's because my brothers (more one) and I try to balance it better now so no one person is doing everything, we are sharing contact and responsibilities so she doesn't feel as boxed in by one person and we don't wear on each other as quickly. It's not a perfect system but it's working for now. Another reason involving more family and or outside help if possible will be a big help.

Yes Smeshque, the most absolute truth, God always gives strength!!

Great advice Rosses, on both comments.
Best wishes Dave, You can do it. God gives strength.

Thank you Polarbear, I just think we all deserve love and consideration.

Dave, just as a suggestion, while she’s in this extremely depressed state it might be a good idea to have moments only the two of you, talking like a couple (you can do the talking), go to a park or any quiet place. IHOP -while a delicious choice!- might not be ideal as she probably feels uncomfortable surrounded by so many people. Maybe buying the food there but eating it some place quiet would be a better plan! Keep in mind you’re not her caretaker anymore, so it’s not about just taking her out and ensuring she eats. It’s more about reconnecting with her, and believe me, I fully understand it’s a tall task, but with time, carefully and lovingly I think you’ll reconnect with your wife. Most of us have an special switch that somehow knows to respond to love, even in our darkest moments, we recognize true love. Show it to her!

And I also hope the rest of the family can visit her too, not as a duty, but as a wish that comes from love!

Hi Dave,

I echo what Roses beautifully said.

Also, it's important to NOT blame yourself for your wife's decisions to attempt suicide or to not take her meds. She's in control of her actions and her life, not you.

And don't let anyone blame you or guilt you for putting your wife in a home. They don't walk in your shoes, they can't understand your struggles.

And don't feel guilty for having your new found freedom. Precisely because of it, you are able to be a loving husband to your wife, and not a burn out caretaker.

I'm so glad for you.

Good input roses. Yes, I had her out most all day Sunday. Took her to ihop for lunch where she cried most of the time. I wondered if people around us thought.. oh well. Made her dinner at home and took her back. Found out today she's still refusing meds. ugh. Hoping she'll settle in soon and get on her meds.I go see her 4x a week is what I have setup. I keep encouraging her family and mine to see her also. Hope some of that will happen.

Dave Be sure to get some "me" time in there, just for you. Exercises are great, and concerts too.

Hi Dave,

I’m joining late this conversation but very glad you got to a better place taking the proper practical steps. This site is a great source of ideas and input.

I actually was going to start by suggesting you got help for yourself to treat depression as you seemed to need it, but now that you’ve time for you you may be able to free yourself from depression through healthier avenues, like taking walks, socializing with old friends, exercising, or even vacationing like you mentioned. All parts of life we all deserve to enjoy for mental and emotional hygiene.

Now, without intending at all to fuel guilt in you, I’d like to remind you not to forget your wife and her needs. Remember you’ve a big advantage over her: you felt trapped and exhausted as her caregiver..but you had the opportunity to find a way out.
She doesn’t, she’s trapped within herself, she too is tired and depressed beyond limits (to the point of attempting suicide) and very likely feels rejected and like a burden for you and family.

So now that you’re in a better place and can get healthier yourself you’ll be in a much better position to be the loving and attentive husband she deserves and desperately needs.
Please be that for her. You’ve got the situation to a point where it’s humanity more manageable for you, so now it’s time to show her that you didn’t simply “get rid of her”, opposite to that, now you can help her and LOVE her as she should be helped and loved.

Remind her that you know there’s a woman inside that body seating on a wheelchair, a woman that you love. Tell her you love her, and mean it! Not as part of a discussion justifying why she’s where she is, but as part of a husband and wife honest moment. Help her not to feel as someone with an useless life, and try to think about ways for her to do something she might enjoy..maybe reading? You can read for her, or take her out for walks pushing her wheelchair where you do the talking, and tell her she doesn’t need to answer. Brush her hair not as a duty but as a connecting time for both and a relaxing time for her; bring her flowers, watch a movie together...Try to give new life to your relationship adapting to the current circumstances! There’re always ways...if there’s love.

This is the part where the marital vows really come to life! Now you are able, so show her your love and help her get out of the depression hole she’s in.

I applaud and feel grateful for you to have found the courage and the clarity to take the necessary steps to help yourself, you needed to do this. Now, re-fuel your tank to truly show the meaning of your love to your wife!

May God bless both of you and guide you on this journey!

Its so encouraging to hear a success story! You stayed strong and focused despite the horrific suicide experience knowing you had found the right path.

As you pointed out there is still alot of heartbreak to follow with you and the kids. They need a clear headed decision making Dad at the helm going forward.

Now that you are swimming rather than sinking your journey will be easier. Things always look better when you can think and breathe.

When "you are going thru hell...keep going!" Bravo Dave!

I certainly appreciate having you folks to lean on. You know what this is like. Feeling all alone in this journey. The journey still continues as know. Calls today crying, the "why's" and visits like today after work and so on. But every once in a while I'm going to have me a little "Dave time." Smell some fresh air. Take in a concert. Shoot... maybe even a me vacation. lol! Life is short. Better enjoy it while it's blazing by fast.

I even had time to do some exercises this morning. lol! Have some cholesterol I need to manage.

Thank you, Dave. Come back, occasionally, report in! I am glad your wife is in a safe place and will be cared for professionally and with compassion. And that you have a chance to take that deep breath and sing a little! Music is the key!

Wow Dave, you've really got talent.
Maybe a recording contract is in your future?

I'm so sorry to hear that your wife had an episode of attempted suicide. But I'm glad to hear that she's in the facility where she'll be taken care of and you can get your mind back.

Keep us posted on your and her progress please.

Thanks for the inspiration! We never get to hear from folks here, so that was a real treat. I'm saving it for my down days. Praying for you both!

Well done Dave!!! Very well done.

SO HAPPY FOR YOU DAVE. VERY HAPPY!!!

YES, I AM SHOUTING.

Well... today is the day. It's been a journey I tell you. My wife is now in assisted living. Moved her in today. The Medicaid journey was long. Filled with departments giving incorrect answers, waiting for each other to move and so on. Anyhow, that's done. My wife is a mess. When we were close to assisted living last week she took a bunch of pills and tried to kill herself depressed of that route. She hadn't been taking her antidepressants for me. So ER visit #6 was in our plans. My head was spinning from the everyday life of caring for her, but going through medicaid etc. and her "extra" questions every day about it really had me a mess. I am flat worn out. Dang do I need a vacation! lol!

I hope this goes well. I had her in a temporary nursing home after the pills thing earlier this week and that didn't go well. Had to pull her out and back home. Wasn't a good place. The current place is good. Not great but it is good.

Anyhow, I am 53... and I have some options. I still have to work, and still have lots of visits. But I have some me time for the first time in an awful long time. Lord guide me.

I want to finish strong.

This is a song I wrote and recorded in my little home studio. It's called (go figure) "Finish Strong." I pray you all get the chance to finish strong also.

God bless you all,
Dave

soundcloud.com/davebyersmusic/finish-strong

Dave, I'm so proud of you for getting the right information and starting those wheels rolling! You are doing the right thing. You have people rooting for you!

Rooting for you, Dave. You can do it! And it is the right thing for all of you. I agree she may need more antidepressant. Talk to the dr about handling this transition. Believe me, of you were my son in law and your wife was my daughter, I would want you to be doing this Take care of you!!!

Dave,
Take one day at a time. Don't think 2-3 months in advance, think TODAY only. You can get through anything today!

Then tomorrow is a new day. One day at a time. The time will go by faster if you don't sit waiting for it to pass (you know, a watched pot never boils.) Sometimes it's a minute at a time. It's all you can do at the moment. But then it's done and the time is finished and you did it!

We're all rooting for you and your wife. You're not an effective caregiver if you are stressed to the max. It will be much better for you and her when you can just be a husband who visits instead of a caregiver. Yes, she'll fuss but it's going to be better than having to do all her care and possibly shortening your life span.

Hang in there.

You can hold out Dave.....you must. You have come this far and have done an exceptional job under the circumstances. Better than most....

For the sake of your children your business and your own mental and physical well being these changes have to happen. Maybe your wife will take some comfort in knowing you are doing everything you can to preserve the life you built together.

I am guessing she is already on some sort of anti depressant. You might want to explore with her Dr other brands or doses. The next few months will be challenging.

Keep the faith.....

I haven't posted in a bit but things are moving along. Had our medicaid exemption meeting with the aginng dept yesterday and signed papers. They will be forwarding to medicaid and I'll have an apt with them soon. Got her to the ssi office today as she has to have an income. Took her name off the house. Someday's she's ok with it, but the next few she's right back to crying and "why, why, why..." etc. Today was the "exactly how many times a week I'll see her" question. This was the followed by her making gestures that she thinks that would go down and down and then I'll forget about her and more crying. It's awful tough and I knew this would be. From conversations and expected waiting list times at the best facility I've found nearby I'm guessing 2 months minimum to maybe 4-6 at worst case. Sure hoping I can hold out that long...

When we were researching care options for my Dad respite care was offered as part of Medicaid and Hospice. It provided for a 7 day stay in a nursing facility for the patient so the care giver can go on vacation or just get a week of relief. Check your insurance to see if they have something similar. It might be a way to test the waters with your wife.

If needed, instead of divorce, you could consider a legal separation and say to her truthfully it's about protecting assets so you can take care of you and her. Also, go without her to several nursing homes to find out what they are like. Almost everyone going into a nursing home fights it. Your wife's behavior and depression will be nothing new to the staff. My mom refused to go to anything (she's not social). The activities people ask. If she says no, even with dementia, they can't make her go. So u finally suggested they don't ask. Just take her. There are things mom won't do, like bingo. But they take her to mass, Yo things where there's cake, to the hair salon. If activities comes around to do nails she gets them done. Your wife might enjoy bingo and movies.

She will probably adjust. The first weeks will be hard.

I can only speak to the respite situation in my state. Most states have differences so, please understand and check your own Council on Aging. I called when my husband was first diagnosed. I needed help and didn't know where else to go. I got help! Because I am also age 83, a cancer survivor with two heart attacks behind me, I was eligible for some assistance. Respite care is provided when the caregiver is overstressed, or at risk of serious illness. During this time, assessments are made and decisions reached about how best to advise us. He will seriously object to placement in a Memory Care unit, but I will have to trust the staff to help him through such a difficult adjustment. I hate this-- but I do accept that I can no longer be a good caregiver. I CAN, however, be a most excellent visitor and will be. He will be safe, cared for and about. You can do it, too. Expect recriminations, tears, loud complaints. And start a search for the best facility near you for her. And read sites like this one. There are many, many ideas here. Look into the details of handling the typical, 'normal' behaviors we encounter. (Fantasies, wanting to 'go home'., etc.) I did not know these things when the disease was manifested, I did not behave in the best way. I do know now, and you can learn as well. Now, look up the number and call whatever Council on Aging in your area. They ARE on your side!

garylee - her doctor says LTC and that you cannot do what she needs. Listen to your doctor. LTC it is whether she likes it or not. You have to consider yourself and your son, and providing properly for your wife's needs. Talk to her doctor about how to manage the transition to LTC. There is a saying "between a rock and a hard place". I think of it as being a rock in a hard place. Be that rock.

Dave,
You're doing all you can. Being a caregiver and spouse is definitely not easy, but you do need too take care of yourself too! Respite is important for
both of you. Lots of great advice & encouragement posted so far..maybe look into home care CNA for a few hours? Keep searching, don't give up.

Oh please, what is respite care? How do I qualify? I'm going crazy trying to figure out how to keep caring for my husband. He had a devastating stroke 13 years ago, this Feb. 20. Right side paralyzed, but kept his "marbles". I'm grateful, but not I'm 73 and he is 74, and he is becoming weaker while I am getting short-tempered. My Elder Care attorney will help me when we need Medicaid, but I really know nothing about respite relief which I need sometimes. Thank you all for sharing. I thought I was alone.

You sound like your in the position I will soon be in. My wife had her 4th stroke in November 2017. The others have been spread out over the past 15 years. She recovered well chook the ready of them but this one took out het right side. She probable has less than 30 SNF days left and will be coming home. For the past 90 days she had been in between the SNF and hospital. I habe spent anywhere from 4 to 15 hours each day helping the staff take care of her.. She is also bipolar and doesn't appreciate anything I do but expects it. She makes progress in rehab but then has to go to the hospital, then falls behind. This week she had 3 lazy days where she revised rehab. It takes 2 people to transfer het from the bed to the wheel chair and then to the toilet.
I'm only 1 person. I ask also raising any adopted son (was my step -grandson )15 years old. He's great, makes it will worthwhile. Hugs me in front of his friends, and tells me he loves me all the time.
We live on SSD only. I injured my back in 1996 and haven't been able to work since.
I'm about a month I'll be working 24/7 taking care of a woman who never uses the words please and or thank you. Her, and my Dr said she needs long term care and that I'm not capable of what she needs. She will NOT accept LTC. I don't know what to do.

A couple answers have mentioned respite facilities. I would like to hear more about these. I want to keep my husband home as long as I possibly can, but have needed a break recently, and have not known where to turn. I have a neighbor who can check on him for brief periods, but I'm wondering about a little longer term.