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Hi Everyone! Well this is my first post here and from reading the prior posts I am so glad I found this site and y'all. I want to apologize ahead of time as this is probably going to be a “book” instead of a blog. I have no one to talk to and no one to help (what is left of our families live quite a ways away). Well first some background. My honey of 30 years (no we are not married) first had severe heart attacks after we had been together 3 years. Two years later he had to have a defibulator implant as he almost died from ventricular tachycardia and they found he was diabetic with a blood sugar of over 800. Thirteen years ago he had two strokes…one major, but thank Heaven he was not paralyzed but his mental capacities and balance were affected. I started doing rehab on him from the time he left the hospital and he improved dramatically though he would never be able to work or drive (vision was affected as well). I was thankful that I had taken care of my Dad (and done rehab on him) and my Mother who was disabled as well. In November, my honey was hit with V-tach (severe) again and was taken to the hospital three times. This past December they had to implant a combined pacemaker/defibulator and we were advised that he was in advanced congestive heart failure. In thirty years we have not fought or argued until around February. He started getting verbally mean, derisive and argumentative. When I told him to cut it out that I would not tolerate it, he told me to get used to it as this was the way it was going to be. Since then it has gotten worse and he has told me I will not go back to work even part time! I am still not tolerating it and refuse to talk to him when he acts like that (he won’t listen to me any more on anything). I have to go back to work as my Social Security will not cover the bills and my unemployment is ending. By the way no luck on the job search (out of work since July of last year). I am looking for a part time job (so that we do not lose our home) near home so I can get home easily if I am needed. He has become so self centered (and in ways I understand) that our major argument today was over the fact I would not go out in the pouring rain to get him a donut. (we have food here). Seems like all of the arguments have been over something minor and dumb. I don’t get angry or frustrated over the subject of the argument, only his lack of respect and attitude toward me. Right now he has mobility issues due to the edema (fluid retention) and I got him a walker (rollator) which has seemed to help some with the mobility issues. He was not like this before and always treated me with love and respect both in private and in public. He is 65 and I am 66. I forgot to mention that I have had 12 strokes (2 major, the others minor) with the first happening when I was 29 and the last one Feb 2017. The first two were the bad ones and I rehabbed myself …took two years each. I was also diagnosed in 2002 with congestive heart failure and have a very bad back and hip from a fall 7 years ago. He is 187 lbs and I am a very short person (4’10 ¾) who is 60lbs overweight (losing it slow but sure) so when I help pull him up to a sitting position or help him get up it racks my back up again and puts me on a tens unit and a cane. Just start getting well and it happens again. Such is life. I could go on but I won’t. He has doctors appointments tomorrow and I am dreading it. I have already been told to keep my mouth shut when we see the doctor (which I won’t for his own good..especially being his caregiver). Anyway thank you for letting me vent. Not sure what the answer is but moving him to somewhere is not an option to be considered and he won’t allow a home care service to come in. I am just not sure what to do anymore. Right now I spend a lot of time in my study trying to get creative again as I am also a digital animal portrait artist/digital artist. Amazing what stress and worry rob you of. So afraid that I am going to lose him. I still love him as much as I did 30 years ago and wouldn’t trade him for the world.

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Hi... thank you both for your wonderful posts.

Wouldustayorgo: I totally agree and have steeled myself for the inevitable. It is his decision and when God is ready for him to come home I will know that it was time. I took care of my parents after my Dad has his stroke and was in a nursing home (I was the only one that he would let feed him, give him a bath and care for him so I was there all hours of the day and night) and took care of my Mom who was disabled and in a wheel chair. I watched both suffer and at the end of my Dad's struggle, I told him it was ok for him to let go (as I did with my Mom) and that he go home, that Mom and I would be ok. Mom and I got to say our goodbyes the night before she passed and we had the nurses in tears. I would not trade my time (5 years) with either of them, just as I will not be thankful for any time I have left with my honey. He has been my life, my rock, my love and my soul mate for the last 30 years. It kills me to see him suffer. He seems to have rallied some and some of the edema has gone down. I hope he has more time here on this earth so that I can show and tell him how much I love him. But when his time comes, I will let him know that it is ok and that our 4 legged "babies" and I will be ok.

Surprise: Thank you. (smile). He is very special. We do have a poa, will and living will for each of us that we did quite a number of years ago. I am a donor and have been for many years. I also hold power of attorney (both medical and full) though I know his family will honor his and my wishes and will help in the arrangements. His brother and his wife and I are very close and they are the only living blood family he has left. I carry a donor card and am working to make arrangements for our 4 legged babies should something happen to me.

I just wanted to thank y'all for being there for me. I have no one to talk to as my brother and daughter live a long way away as does his brother so we are virtually alone here with no family close.
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One thing I must tell you. My mother with many health problems has told me periodically over the past 18 years that she is dying. I have come to the conclusion she is just especially frustrated or hurting and not dying. You cannot make decisions that are detrimental to you in order to let him have his way because your honey is dying. You might go before him.
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I’m sorry you are going through this. On top of his strokes & damage to his brain, he is now dealing with his mortality after February’s episodes. His meanness comes from despair. He sees his legs get swollen and it’s probably beginning to become a hard reality that his life can be coming to an end.
Also, maybe ask his doctor for an order for Oxygen at home; some of this personality change could be from his brain not getting enough oxygen due to his disease. Maybe an antidepressant or anti anxiety medication may help.
A hospice consult may help with getting the oxygen order & everything else mentioned.
How sad for you! Thirty years is a long time. My husband and I will be married 34 yrs in August and he is my rock- he turned 65 last year & that got me to thinking a lot about what I would do without him (I know, I know....65 is young!).
Does he have Advanced Directives or a Living Will? Not to sound fatalistic but you need to know his wishes both financially & for end of life.
So much to cope with. I would safely say his episodes of being curt & impatient are due to what he is going through now.
Best wishes to you!
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Dusti, what a sweet relationship you have had with your honey. Do you have a POA and will for him and vice versa? If one has no PO and no will, the other may not be able to be a part of the final goodby and funeral planning. I know that would be heartbreaking as well, and I don't want that to happen to you. Your state's legal aid website will likely have some sample forms you can use and a number you can call for help.
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Dusti22. I know how much that conversation hurt you to hear and he does too. I had that conversation with my eldest sister just 2 days before she passed. Not one person in my family wanted my sister to pass, but like you, it was not our choice to make. She caved into our wants almost 2 years earlier. If I could do that over I would not have asked her to suffer like she did that last 2 years of her life. I would say talk to his brother but don't try to change his mind out of your needs. If he is suffering and telling you to let him go in peace please know that it was hard for him to say that to you. Make your peace with God and let Him take it from here. These are just the thoughts of someone that has been in this same position and know what it means to continue to hold someone to an illness they can never heal from and only worsen from as time continues. Good luck and my God bless you with peace.
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Just a follow up to my earlier post. First thanks y'all for being there for me. I am sitting here with tears streaming down my face. Not because my honey and I had an argument, but because he was my "old" honey tonight. We had a talk tonight and I can't help but feeling that he was saying goodbye to me. He told me tonight that I am seeing a man die in front of me, but he will not go to the hospital to see if they can help him. We talked for awhile and then I had to leave the room not out of anger but because my heart is breaking and I didn't want him to see me cry. I don't know what to do to help him. I cannot force him to go to the hospital, but am praying that he has a change of heart. His faculties are all there. He did not look good tonight and the edema has returned in full force. He has told me not to tell his brother, but I am wondering if I should anyway. He was a paramedic. Maybe he can talk some sense into him. They are coming up this weekend. I think my honey has just given up hope but I can't.
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I hope that blowing off steam helps. Come here to vent as often as you like! We don't typically judge and we often have similar experiences to relate to yours.

Another place you can vent and get support is a local caregivers support group. These can be life-saving! Or at least sanity-saving. And consider counseling for yourself. You are facing life-changing decisions and deserve support!

My husband had chf and a defibrillator and a pace maker and a ton of pills to take. But what really put me into caregiver mode was dementia. When the brain is damaged, all bets are off. My husband remained a kind man, but he was definitely not the same kind man I had married 25+ years prior. And I could see that I was losing him bit by bit. Heartbreaking!

I loved him as much as I ever did, and I can understand your love and commitment. He stayed at home with me for the full 10 year dementia journey, but I never promised that would happen. I told him and our children that I would be his caregiver as long as that was working. And I would never abandon him, even if he needed to be in a care center to get the care he needed.

His brain was broken. Mine was merely strained! So I made the decisions. There would be help coming into the house. That was not negotiable. (He didn't mind that.) He would go to an adult day health program a couple days a week. That was not negotiable. He did not want to do that, but I explained that it wasn't only up to me to keep him living at home, he had to do his bit, too. We did have someone stay with him when I had to be out of the house. He didn't think he needed a "babysitter" but it wasn't his choice -- it was mine.

Your honey has brain damage. He can't be the one to decide the level of help you need or your economic necessities. If you have been used to sharing decision-making (we had) then this is a huge change for both of you. Bigger, I think, than some of the physical changes.

Keep coming back here. We care!
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Dusti22, Just like to start by saying I understand your problem. I don't know if you have figured it out yet or not but it is not you or anything you are doing that is causing him to be angry toward you. When a person has brain issues they do the things they remember the easiest for them. Ie.. be mean, curse, and other things like that. Even if they never did it before. Please don't feel like it is your fault that he is talking like that towards you. It is not anything you are doing, and there probably isn't anything you can do to change it. If you pray, you might want to try that. And keep loving him. I will keep you in my prayers as well.
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Dusti22,

First of all,  congratulations on having found true love that leads to true commitment!

Having said that, I’m stuck at “I forgot to mention that I’ve had twelve strokes”. The fact that you can “forget to mention” something like that, plus you having spent almost your entire life taking care of someone, being that your dad, mom and now grumpy honey, tells me you’re a very, very giving person. Which in most cases is a true a gift and a blessing ...yet, based on experience, it’s also a double edged sword.

Sounds to me like you my dear, need to take an step back and re-assess. Start with your own health situation, your economy, his declining health and his even faster declining ability to be kind.

What does that add up to in your book? If you’d a friend in your situation, what would you suggest to her?
Sometimes we know a good part of our answers, but cannot see them because we’re overwhelmed.

Do you mind sharing why have you determined that an outside care facility is not a possibility?

And about him..or the dogs for that matter..not accepting a third person to come into the house to help...really? If you were sick to the point of being unable to care for your honey, or cook, or clean...what would you do? Probably resource to that third person. So, why not do it to help you NOT to get sick to that point?

A loving and well intended reminder that sometimes we caregivers close our eyes to options that are actually there, but we are so tired, so worried, so alone, that we are afraid to even consider them.

If your grumpy love, loves you as much as you state and as much as you love him, trust me, he wants the best for you, even if his sick body and mind cannot see it or express it,he wants you do take care of yourself, as a priority, which in the long run translates into taking care of both of you, your relationship, your home, your economy and your happiness, despite a less than desirable golden years retirement plan.

A hug for you and may God bless you, enlighten you and strengthen you!
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Hi mally1. He would never hurt me. I have no doubt about that. That look does not spook me, just makes me sad as there are still times that I see the soft loving look I used to see all the time ... though I do not see it as often now as I did prior to this last go round of problems. I believe a lot of it is the frustration and hurt pride.
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Even with the cold, hard look in his eyes? That would spook me....
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Hi freqflyer... It sure wasn't what we had planned, but you are right. His pride is hurting him even more than before. So he is angry and I am exhausted (smile). I lost the strong person that I originally fell in love with 30 years ago when he had his strokes, but still love him so much. Now my honey, though I still love him is like a stranger to me at times when I see the hard cold look in his eyes. I have to return to work to get a caregiver in as we cannot afford it. Have two dogs so not sure they would tolerate a stranger. Makes for an interesting situation, but I am in it for the long haul and wouldn't trade each minute that I have with him.
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Dusti22, welcome to the forum. Oh gosh, this isn't the type of future retirement that the both of you had in mind years ago. As yo both have found things can change in an instant.

Your sig other is upset with himself that he cannot do the things he love, so he is venting at you. And probably jealous that you are able to be mobile and he's not. Is he receiving disability income?

So many people do not want caregivers. I believe because that is the ultimate defeat when one is hired. One way to get around this is to say that the caregiver is there to help you, yourself.
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