I need a break. But how?

[poppies]

Hi everyone, I didn't want to hi-jack anyone else's post so decided to start a new one. I just need someone to talk to about this who understands, so thanks for being there all of you As I have mentioned in other posts I am my husband's only caregiver. He refuses to allow anyone else do anything for him - ever. Which means if I have to go out he cannot eat, drink or go to the toilet. It is incredibly stressful because I am always rushing and worrying when I am not home. I usually only go out to lift kids and to buy groceries but on the weekend I had to run errands - get meds, and some warm clothes for my husband as the weather gets colder here. It took longer than usual and he has been angry with me ever since. Refused to eat or drink when I got home, both days. Refuses to eat food that is not freshly prepared, even soup prepared the day before is not acceptable. I will offer three different meals and he will not want any of them but will then complain that supper is too late. He refuses visitors except his mother who comes once a week for an hour and a half. I have to make her coffee and entertain her as he struggles to speak and will not even try in front of her. This weekend I asked if my mother could visit, for the company and she is such a help around the house. He got angry and upset because he doesn't want her (or anyone) here. When she was here he was very difficult and sullen. It was so exhausting (not to mention embarrassing). So the short of it is I have spent the past few days doing nothing but my very best for him, but it is not good enough. I adore him and will do anything for him. I just wish I could have a break. I am so exhausted. How is it possible though if he won't allow anyone else to do anything for him? I feel terrible about it because after all he is going through how can I make things worse by forcing him to accept help from someone else so I can have a break? It seems so selfish of me. Boy, I wish I had the answers. Oops! I have gone on way too long. Time to get hubby up. Thanks for being there all of you. Your posts always make me feel better

 

[Nikki J]

I am so very sorry. Sending you a virtual hug. Wish I could also send you a holiday!

This is beyond difficult. I think you feared he has FTD? If he does then reasoning is probably impossible. The truth is that you need a break and if you do not get them you risk illness or injury and then where would he be? It is not unusual I think for PALS even without FTD to make choices that make their CALS lives harder. At least I have seen it in my family. Ultimately it was to the PALS detriment but I do not think they ever realized it.

I don't know what to say except if you set up respite care and went he would have to deal BUT the consequences could be great in resentment or it could work out. I realize this is unhelpful. I have seen it as I said and have asked family to tell me if I start making selfish choices. I hope they will

 

[DreamsEnd]

Poppies, I am so sorry! You do need a break, we all do. I, too,struggle with leaving my PALS even though he worries about me and encourages me to get out. I agree w/Nikki and wonder also about FTD. Was he like this before his diagnosis?

Your love and concern come through strongly. You need your mom and her support. Your husband's behavior is his issue and you have no reason to be embarrassed, especially in front of your mom.

I'm temped to say just schedule some respite and get out. Yes, there will probably be consequences but what are the consequences to you by not getting a break or help?
Can't wait for Tillie & Barbie to jump in on this one.
Sending big hugs and support.
Sherry

 

[avnl]

It seems like no matter what you do, he is angry. Will he be any angrier if you take a break or if you offer only one choice for dinner, or have someone come to the house to visit you or allow you to do errands? Are there times when he is calm,rational, or even conversational. You will need to toughen up if all this is an irrational rage. There is no way to make him understand your position if he is in a rage.....a bit like a toddler, or someone who has had too much to drink. You are the one thing he can control and it would appear he is in the driver seat. There will not be a car if you fall apart. The mental stress you are under is immense! Ask yourself what is the worst that will happen if you allow some "You" time and problem solve your response. I know easier said than done. But I think you need to be expectational and steel yourself for the changes that are needed.
Anna

 

[kingsaustin]

Dear Poppies, I'm truly sorry for what you're going through. It is a very sad and unfortunate situation, I know I went through what you're going through. It's so difficult because not only do you (at minimum) want to give him this independence with allowing him to make a choice about who cares for him or who he allows to see or not see, but when it comes to caring for him "you" know exactly what he likes/dislikes how exactly he likes or wants things, i.e., positioning, etc. which you know if someone else comes in they're not going to do it exactly how you do things.

He, too, was very adamant about his wishes. At one point, he even told me I was superwoman and could handle anything and do it all. And while I think he was trying to be complimentary the way he said it I took it as he didn't care about me. Unfortunately or fortunately, I was pretty vocal with my husband about how I was feeling, albeit at times he didn't appreciate it. However, I would tell him just like it was - that if anything happened to me then what - He would have no choice but to have to let someone else take care of him. I was (as I always had been with him throughout our lives together) very candid and told him one time that while he was a prisoner in his body I, too, was a prisoner however I was a prisoner in our home because I couldn't allow myself to leave him for fear something happened to him. Eventually this reality set in and he realized the severity of me losing my health and/or mental state and while it was still very hard for him (and me) with time and opportunities we were able to ease into having someone else come in to sit with him while I ran quick errands. That being said, I put together exactly what and how I did things, i.e. putting him on the ventilator, suctioning him when needed, putting him on the pot for BMs, etc., and with his approval of what I wrote up provided that for the person helping us out and we would also have a dry run in both of us being present and going through the motions/task so my hubby knew he was in good hands. Again, it wasn't easy as me over anyone else and I too preferred being the one taking care of him 24/7, but at some point every caregiver does need a break. I pray for you and for him. God willing He will open his mind and heart to realize you need help.

As others have posted you will need to toughen up or something is going to give and hopefully it won't be your health or mind...God bless you both. You will be in my prayers.

 

[Nuts]

Poppies, what an aweful, impossible situation. His demands are not rational, and it's tearing you down. You can't be a good caregiver if you allow that to happen, so you must get that break. Yes, there will be consequences; hell, this is ALS, aren't there always? Ultimately, you know what is needed for both of you. You need your mother and you need a break. You also need help--he's going to have to accept that if you are to go on caring for him.

Has he been evaluated for FTD? If that's what's going on perhaps the knowledge will allow you to get over being embarassed by his behavior. Hugs.

 

[4tloml]

I am so sorry for what you are going through. Others here give such good advice--you really do have to take care of yourself--physically and emotionally, or your PALS will be much worse off than he is now. Taking care of you is taking care of your loved ones, too.

Trying to respond with logic to illogical can be crazy-making. If it is FTD, it truly is the illness speaking, not your PALS, so you have to make the healthy choices for him--he just simply can't. I'm so so sorry, because he just may be not able to break through this layer of illness to show his appreciation or affection. ALS is a beast, and FTD makes it a really nasty beast. He is on one side of it and you are on the other. My sense in working with others with forms of dementia is that they do sense care and kindness but are simply unable to respond to it. It can sometimes feel futile. But you are being so loving and honoring of him. You are amazing! Please be good to yourself now, too, and let others in to help (your mother, others?). Helping you is helping him, too.

Will keep you in thought.

 

[Barbie]

Poppies, I was struck by your description of yourself as "selfish" yet do you see that is what he is being? and a big baby too! sorry, but that is the truth as I see it. Yes, he has ALS and it is certainly not his fault nor does he deserve it, but you are only human, and the one who loves him most of all. YOU matter too! You sound as if you are close to breaking down and then both of you as well as your kids will be up a creek with out a paddle!

My husband does not have FTD, but some personality changes and not as kind as he use to be, and he was similar to your husband originally. I was spending a lot of time weeping and had lost about 15 lbs from stress and exhaustion, and decided that If I didn't get a break and some help that I would die before him. At that time we had brought in hospice and he got 2 baths a week from them, which was hard to work thru but the nurse convinced him she had seen it all and there was nothing special about his junk! I went ahead and with much secrecy and fear, scheduled a 4 day holiday. I scheduled about 4 people to cover him all day and night every day and night. then about 3 weeks before the trip, I told him when he was in a fairly good mood. he got very scared, but I told him the entire schedule and I started crying (which helped LOL) and told him that I could not go on and that if I didn't rest I would lose it. I think I scared him--I was letting him see the hot mess that I truly was! I was so afraid that he would be angry and lash out at me but he handled it ok.

any way--I left, his care was perfect -- everyone showed up, treated him like a king, told him how wonderful he was to let me have a break. and of course, they all told him they could not believe that I had been doing all his care alone for so long and it was too much! he actually enjoyed a break from me too! I was so refreshed afterwards it was a miracle. and my sister in law (who flew in from out of state just to do this for me) insisted that I get in a caregiver to help after she left. she was in shock as to how much work it is alone (I had 3 kids at home and a full time job also). the experience opened the door for other caregivers to come in. now he is fine with others doing his care and is only unhappy when then do not know how to operate his chair.

I hope my experience helps you move forward.

 

[MaxEidswick]

>Poppies, I was struck by your description of yourself as "selfish" yet do you see that is what he is being? and a big baby too! sorry, but that is the truth as I see it. Yes, he has ALS and it is certainly not his fault nor does he deserve it, but you are only human, and the one who loves him most of all. YOU matter too! You sound as if you are close to breaking down and then both of you as well as your kids will be up a creek with out a paddle!

well said, WP

 

[Dizmom]

Poppies,
I agree with what everyone here has said. I am lucky that my PaL will allow other caregivers after I show them what I do, and also make a list with times and what needs to be done. I just hired a caregiver from care.com. I can't believe how many responses I got from my ad. I brought 5 in to interview with PAL and he picked one lady who had a previous PAL. So many of the applicants had ALS experience, maybe your PAL would accept one of those after you went through your routines with him/her?
YOU do need a break, Please be firm and find someone who can help. Prayers and hugs to you!

 

[poppies]

Hi everyone. Thanks so much for taking the time to respond to my post, it means so much to me. It has been a very tough few days. First I asked my husband's mother if I could go out when she came over so I could get on with other things. She said no, that my husband would be too uncomfortable being alone with her (I think it is the other way around). So I asked my mother to come over to help yesterday (I asked her to come for the night because I had to be out until after dark and it is not safe for my husband to be here on his own (crime is a big problem in South Africa) and to help me prepare meals for the evening. On top of it there was loadshedding (electricity blackout) scheduled between 6 and 8pm), so the whole area would be in darkness. Well, he completely freaked out when she got here. He said that he does not want her or anyone in the house and that she must leave straight away. When I resisted he told me to find a nursing home that would take him straight away as he can't take it here any more. I was devastated.

So. Having read your posts, I have decided to take charge. This is very difficult for me as my husband is very strong willed and always has been very resistant to me making decisions. I phoned Hospice and arranged for our usual sister to come for a visit today. Later in the day the Social Worker is visiting for the first time. I have asked her to come so that she can guide us through this process of change as my husband learns to accept (or doesn't) that I need help.

I don't know if it is FTD, sometimes it seems like it is , at other times it doesn't. I just don't know. Either way I have to make changes so that I can get strong again and face what is still to come. Thanks again for all of your posts. Your words have given me the strength to stand up to this challenge. Love and hugs to you all.

 

[lgelb]

Poppies, you have had lots of good advice. I think the main thing when you meet w/ the social worker is to think about what your main goal is (certainly, to get the rest you need, but more broadly, for your husband to be more comfortable as well -- he is obviously in more distress than he needs to be). Whether it is FTD or not, whether it is a question of deeper conversations to the root of the problem, better treatment of pain and/or mood stabilizers, it is a process you and the staff there can initiate. I hope your meetings are productive. Use "I" statements for your part but encourage him to do the same.

 

[poppies]

Hi Igelb, yes it was good advice. It made me take a step back and gather the strength to stand firm in following through on setting up a better routine that includes the help that I need to be able to function better. My husband's well being is my priority. If I am not functioning properly I will not be able to take the best care of him. He needs me to be calm and relaxed around him and to do that I need to reduce my stress levels. Unfortunately my husband can only say a few words that are only intelligible to me so conversation and counselling is extremely challenging. While it was a very stressful, emotional day seeing the Hospice nurse and then Social Worker, I feel that I am on the right track moving forward. While it is stressful to go ahead with plans that my husband is resistant to I have to look at the big picture and do what's best for him and our daughters.

 

[poppies]

Good news! Despite the drama of the week things have settled down and my hubby seems to be getting used to the idea of my Mom and Mom-in-law helping. Mom will come in two days a week to prepare meals and stay with him while I am lifting after dark. Mom-in-law will come in one day a week to pick up a shopping list and do our weekly shop. This will allow her time to visit before and after her shop which is so much better for hubby as long visits bore him and tire him out. Also he is finally going along with me getting a recliner for him. None of our current furniture goes above shoulder hight which is very tiring for him trying to hold his head up. We use a collar we got from the States which is helping in the mean time. I can feel the relief settling in and my stress levels going down. Happy hubby, happy me/ happy me, happy hubby

 

[Nikki J]

That is great news! And perhaps it will open the door for more help down the road. Are you getting a lifting recliner?