At the end of my rope

15 years ago

HI everyone I have been lurking on this board for almost a year and I just wanted to get some feed back on my situation. My husband had a stoke on the right front lobe of his brain almost 5 years ago at the time we lost our grandson in a car accident. Since then he has been going down hill but this last year it has been horrible. He thinks he has to go to the bathroom every 5-15 minutes, but that is only the beginning of this horrible disease. He can not dress himself now, he can not shower right he forgets to use soap, he will get in the shower but that is it. I keep his meds out of reach because he would take them all at one time. He eats constantly and doesn't sleep well at night, he will get up and eat anything whether it's ediable or not. I take him to daycare 3 times a week so he will have something to do, but they say I have to stay with him because they are under staffed and he has to be watch closely, which sure doesn't help me out at all. The day care is supposed to give me some down time LOL. The doctor up his meds to see if that would calm him down, he is very active and won't sit still. Within the last two weeks he has fallen 5 times because he shuffles his feet when he walks,but he still wants to go outside. I hide his shoes and coat but he hunts all day for them. The doctor said the next step is a nursing home, but I really don't want to do this. My children are very supportive and take him so I can work 1 day a week, but they have young children and I can't ask them to give time up from their small children. I am getting to the end of my ropes but the doctor says that my health is in danger, I guess I just want some advice as to whether I should put him in a nursing home or not. I forgot to say he is 74, and I can't believe how fast this is going downhill. I am 67 and very exhausted. Thanks for letting me blow off some steam Bevinpa

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Comments (13)

lindajewell
15 years ago
I suspect you already know the answer but Yes, you need to put him in a nursing home. The only other option is to hire in home care but the cost can become more than what you pay a nursing home. You need a little of your life and he needs more attention than you are able to give him. Ask yourself this, are you being fair to him by trying to take on all or would he get better care at a nursing home?
This is just my humble opinion..............
May the Power of God be with you and your husband,

Linda J
agnespuffin
15 years ago
It's always hard to advise someone to send a loved one to a nursing home, but often it is the only solution.

It's impossible for you to keep your health and watch him 24 hrs a day. Then what happens when you get too ill?

At this point, it is a matter of safety for the both of you. If you destroy your health, what kind of burden will your children have if they have to care for the both of you?

At a NH, with all it's problems, he will be in a place that is designed to keep him as safe as possible. There is staff there to watch him 24/7.

Take care of yourself. At this point, YOU are the most important one.
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I'll ask this directly: Does this particular SD (or her absentee mother, your husband etc.) have problems w/alcohol or other drugs? Because it sounds like it. If so, get yourself to Alanon asap. It can help. I really can appreciate your sensible efforts to detach from her destructive manipulations ( I especially applaud your insistence that she be removed from any financial entanglements w/you). And I can relate to your re-attaching to her via rescuing - although I'm no longer a rescuer. Thank God and a tremendous amount of help and hard work on my part. I think what will help your own distress/resentment (and up the ante for her to grow up) is for you to detach yourself entirely from this person and allow her to hit bottom. There are thrift shops in many towns that cater especially to expectant mother's and children; she can outfit herself w/maternity clothing there. There are soup kitchens too. Or perhaps she can consider joining a church and asking for help w/her problems. My point is, she's an adult. It's respectful to treat her as an adult. No matter what. If you are concerned about the unborn child's well being, bring her a small bag of healthy groceries once a week. Maybe she'll eat healthy food, or maybe she won't. Don't give her ANY money for food or anything else. You say that you'd do the same for your own children. I assume you mean you'd help if they were married and gladly expecting a child and were behaving like adults. What parent wouldn't want to help in those circumstances?! This is not the same circumstance. Moreover, you're sending a poor message to your own children by enabling her pathetic behaviors. And that message could have serious ramifications for them/you. What you are doing by saying "no" and then contradicting your 'no' by shopping for her (etc.) is not legitimately helpful. It's enabling damaging behavior and creating confusion and resentment. You are not helping her, you're hurting her, yourself, your family and your marriage. So stop it. And if your husband continues? Let him. Don't enable him either. He wants to take her shopping for club style maternity wear? Let him. Just make certain that your own financial interests are protected in this arrangement. And keep it aboveboard .. let him know that you will be protecting yourself financially. And then protect yourself financially. Notice how much he does/doesn't do when you back off. I suspect he'll enable less if you're not filling in for him as enabler. Ideally, she'll relinquish her child for adoption, since neither she nor the boyfriend are capable of bringing up at child at this point in time. Since there's a snowball's chance in you know what that she'll do that - and since there's a terrific likelihood that you'll be expected to raise their child - I would focus my efforts on making clear your intentions on that score immediately - if not sooner. Hope you find some help in what I've offered. I know that detaching lovingly from a sick situation can feel psychically backbreaking. And, it's so worthwhile. Keep asking for help. I hope you get many replies to your request for assistance/clarification. And I hope you hang in there and avail yourself of the wisdom you'll be given to consider.
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Referring back to the original post, I do think that what tholbrook's SD did ---lying to authorities about her Dad & SM in a potentially very damaging way--- was terrible. It absolutely must be made clear to her that such behavior is unacceptable and that there will be serious consequences when it happens. But I think where you're hearing some divide is over what exactly those consequences should be. Some think it means SD should be banished from the house forever. I and a few others disagree with that. At least at this point. Yes, what SD did was extreme... but it must be properly understood and dealt with for what it was. Everyone on this board I think can more or less agree that she did it for negative attention. Some see that in itself as an offense, the needing of attention. Others see it as a call for help or some other means of resolving the situation. Here's what I think could be appropriate consequences for what she did: -make her write a formal apology letter to the authorities, admitting she lied and apologizing for wasting their time. (If she lies again to them in the future, have her next apology published in the local newspaper.) -make her volunteer every single weekend in a battered women's shelter for a while so she sees what abuse actually looks like and that it's not a thing to lie about. make her tell the employees at the shelter why she's there volunteering so they can help educate her. -make her do her own documentation every day that abuse is not taking place. have her photograph her arms, legs, face and neck every day with the absence of bruises and maintain a folder on the computer with these photos. have her conduct her own daily search of the house, corner to corner and write down every detail in a notebook. -buy her a big fat textbook on abuse and neglect and have her read it cover to cover and quiz her on it. Make the questions as picky as you wish. Until she gets 100% answers correct she will have to re-read the book and be re-quizzed on it every week. -make her go to counseling. make her keep a journal about what she's learning about herself and her feelings and why she felt a need to lie. Don't read it, but set aside an alloted hour each week that she is to do nothing else but write in her journal. You can sit on one side of a big room like the living room while she sits and writes on the other side, or in an adjoining dining room or whatever (so you're not on top of her but you can see if she's writing or not.) Whatever she wants, as long as she's writing something. even if it's total vitriol about you, it will at least be venting and purging it out of her. Then, later she can look at it and see how much anger she has inside and how upset it's making HER as well. -in the meantime, continue to treat her as you had in the past, without making any to-do or guilt trip over it, so that she can see how good she has it and how much of a hassle she caused for herself by lying about mistreatment. Teens will and do lie. Teens do crave attention. Many teens go through phases where they feel as though they absolutely despise their parents, even in the best of situations. Again, what tholbrook's SD did was beyond what the "average" teen might do. If I was in tholbrook's shoes, I'd be livid and deeply hurt myself. But again, the question is what truly is the most appropriate and effective way of dealing with what has been done. In my opinion, simply washing hands of her and shipping her off somewhere else is not going to solve the problem. And even if the thinking is it will at least get her out of your own hair, there is no guarantee that she won't continue to slander you from afar. I won't debate whether some people truly are just bad to the bone... I'm sure some are. (Hitler comes to mind.) But with a minor especially, it's more often the case that such extremes of behavior like this sort of lie is coming from a place of extreme fear, pain, desperation or emptiness. It may not even have anything to do with her parents, but something in her life is causing her to feel that such a lie was the only way to get some need of hers met. If you can try to see beyond your own hurt to see that and address it with SD, you may be able to have a positive impact on who she becomes as an adult, because she is very much still being formed... Basically she just needs to be shown that lying is no way to deal with your problems, and that there are consequences as well as alternatives. On the other hand, if OVER TIME and DESPITE YOUR BEST EFFORTS to talk to her and despite all warnings you give her of a specific appropriate consequence of her doing such a thing again she continues to do it, at that point the idea of switching houses might be in order. But it should be an absolutely last resort, and I think at least her dad (if not you too) should try and maintain some amount of neutral contact with her throughout.
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asolo
15 years ago
Agree with Linda and Agnes above. There's a time for everything. Sadness and/or disappointment don't alter reality. Suggest acknowledging your (and his) reality and taking appropriate action. From your post, it appears to me you're over your head and have been for a while. Looks like nursing home time to me.
stargazzer
15 years ago
I had two doctors tell me I had to get rid of the tension or i would die before my husband then who would take care of him. The symptom of my failing health showed up in my eyes. I saw colors and jagged line in my vision, the eye doc said they were caused by vascular problems in my brain which was caused by stress. I started looking for a care home shortly after that. i've only had one episode since then.
shambo
15 years ago
There's nothing "bad" about admitting that you can no longer keep up with caring for your husband. Placing him in a nursing home is NOT neglecting him. It's providing him with care and also providing you with care. You can visit him daily and oversee his care. But you'll also get a chance to revive your health -- mental & physical.

It's a hard decision to make, but sometimes it needs to be done. You have to face the reality of your situation. You sound absolutely exhausted. As others have asked, what will happen to your husband if you become too weak to care for him? What if your children end up having to take care of both of you at the same time?

A nursing home is not the perfect answer. But you're not Superwoman and you probably aren't as rich as Donald Trump. So you have to do what you are able to do. That's what nursing homes are for.
stargazzer
15 years ago
That is one of two reasons that I envy the rich. They can afford to hire someone or 3 someones to care for their loved ones at home and their time spent with the loved one would be quality time.
donnawb
15 years ago
I am in the same spot you are and my DH is only 51. I think that you have to think of yourself because if you aren't here to take care of him who will. Don't know if you qualify for the medicaid waiver or not but they may be able to get someone for a few hours and few days a week. Sending him to day care and you have to be there defeats the purpose because you need the time to get things done or just relax. Even go to lunch with friends.
lasershow
15 years ago
I am so sorry for your situation. As painful and difficult as it is, the reality is your husband needs to be in a nursing home. The right frontal lobe of the brain is the "secretary", so to speak, of the brain. It's what controls our social impulses, memory, gait, etc. I learned this when my mother had a brain tumor in the right frontal lobe. I tried to care for her at home, but it was not possible and I was exhausted and ready to snap. When it becomes a safety issue, then it's a serious thing. Start visiting some homes now, so you can make a decision without being under immediate pressure to place him.

Stargazzer, it would indeed be nice to be able to afford to have 24/7 in-home care for our loved ones. But that, too, is fraught with stress. High turnover, managing/monitoring the caregivers, and worrying if someone does not show up for his/her shift are just a few of the concerns. There's no one perfect solution, unfortunately.
middlechild_2009
15 years ago
I just want to give you a hug ((((bevinpa))))) even if it is only a cyber hug. I am so glad you have the support and understanding of your children as you cope with what has happened to your husband. You have obviously done all you can for as long as you can and then some.

I saw my Mom go through what you are with her second husband. For awhile we were concerned that she might die before he did because of the stress and lack of rest. He had Parkinson's. Near the end he couldn't even scratch his nose when he needed to and even though we helped all we could most of the burden was on her. When the feeding tube had to be put in the decision about the NH was taken out of her hands, with that and other health concerns he required more medical help than she could provide.

Ultimately only you can make the decision of course, but there are things that I hope you will think about. If your able to put him in a NH near by, you should be able to visit him regularly, perhaps almost daily. Your time together will better than the time you have now, you will be rested and refreshed during those visits. You will have time to enjoy your children and grandchildren and new things to share with him if he is able to understand your conversations with him. As someone else said, it isn't a perfect solution but it will go a long way toward giving you back your life while continuing to protect his.

Whatever your decision I pray God will bless you and strengthen you in the days ahead.
christmasbaby
15 years ago
Hi bevinpa,

I was just wondering how you were doing and how things are going for you and your family. Middlechild's advice and comment seem to be right on and given with love and concern. Please let us know how things are going.
Hugs,
Terri
bevinpa
Original Author
15 years ago
Well I made the decision to put husband in a NH. It was the hardest thing I ever had to do. but it was time. It is very hard when we go to see him, he wants to come home. Today I had to fill out medicaid form which is a first, but we live on social security and I have no choice. Just hope they leave me enough to live on, everyone says not to worry but that is easier said than done. I want to thanks all of you for your support and will keep you updated thanks again bevinpa
sissyfran
15 years ago
Bevinpa:
My heart goes out to you. I remember the sorrow of putting my Mom in a nh. That was 3 years ago and we didn't think she would make it this long. The medicaid paperwork is stressful but just take it one step at a time and it works out. My biggest problem was feeling overwhelmed but just do it step by step and it gets easier.
I know how you feel when he wants to come home. That's a constant occurrence with me as well. You must keep reminding yourself that if you hadn't made this decision, you may not be there to visit him at all or to enjoy your family. You did what you were able for longer than you were able to actually. Take care of yourself and God Bless.
Sis
donnawb
15 years ago
Itis a hard decision to make but you can only do what you can. You have to save yourself.

When I had money issues I worried all the time and I really didn't need any more stress. After about 2 years I finally gave it to GOD and I still had the same amount but paid every thing that needed to be paid and didn't worry. I do know that it is easier said then done. Good luck and keep up posted.

At the end of my rope

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