My husband is 16 years older than me. It used to not matter. We were a happy loving couple and he was a wonderful husband. Last October he ended up in hospital and came out so weak and sickly he couldn't even roll over in bed. He was urinary incontinence with occasional bowel incontinence. I have to do EVERYTHING for him. I tried my best to be a good caregiver but we were denied homecare for spurious reasons contrary to published policy. He continued to get weaker and now he's back in hospital with a spinal fracture because he wouldn't listen to me. Staff say I am badly burned out after four months of unrelieved 24/7 care with no respite or training. And I feel I am. He's in a medical ward right now because they need to find out why he's so anemic. Once they figure that out he goes to some form of rehab. Just today I got assigned a new homecare worker because I fussed a lot and made a formal appeal. She is now talking about giving me homecare and working with the care team at the hospital to arrange a safe release with help for me. That should have happened before but it didn't.
I just don't want to do this anymore. I love him very much and I miss him but the constant needs, his new whining behaviour, his never being satisfied with how I do things (also new) and his new verbal lashing out, the endless smell of pee, constant sleep interruptions, stress at every corner. Try try try and fail fail fail. I just feel numb, exhausted, fed up and done. He's been back in hospital a week now and the constant back ache I was suffering with is gone. I think it was from struggling to move him.
Staff have told me I am feeling this way because of burnout and it can be fixed once I have time to recover and he recovers in rehab. Thing is, I don't want to recover. I don't even want to go visit him in hospital but I force myself to go every other day. We live in a rural community and the hospital is an hour and half drive away so that's my excuse. I want to put him in a nursing home and get on with my life. I'll visit a lot. I just won't do the diapers and care anymore. He just talks all the time coming home and how much he misses me and being home. He thinks he will fix it. This is probably a horrid thought to have but I have been wishing he would just die and get it over with.
Thoughts?
Have a talk with his doctor (not the staff) and explain that you are not physically or mentally capable of taking care of your husband. Then leave and refuse to discuss it any more with the hospital people or your husband. This is a good time to zip your lip and not show up all the time.
Some of us are not cut out to be caregivers and that's okay! I recommend a Bermuda vacation for you. It's far away from everything, and husband will have to find someone else to berate. Trust me, he will. Trust me again, and his caregivers in wherever he ends up won't put up with it. Send him a post card, and have a great time!
It sounds like he does need to be in a facility.
You should not feel guilty. Unfortunately, all this had to happen so that you could get 1 week of rest.
I think you find a faculty. Put him there. That way if/when you do visit, hopefully it will be a more happy visit, time.
Tell the Hospital Social Worker you cannot care for him at home, period. Don't listen to their false promises. He is now a "two person assist" to get him out of bed, bathe, or into a car. You have no room for a hospital bed, medical equipment, or anything he now requires. You cannot do it all yourself. It will take hiring several people and if he isn't wealthy, will cost a fortune. Tell the hospital "he is an unsafe discharge." Repeat it 100 times. They will have to find a facility to take him. Don't fall for their stories how you will get help. Home health is a RN coming in twice a week, for maybe an hour. You will get so stressed out you could easily die before he does.
You will need help with constant laundry, shopping, cooking, cleaning and trying to lift him or please him? No way in hell. You will hurt yourself and then who cares for him? No kids are mentioned, so you are stuck with this yourself. If he is that helpless, he needs to be in a Skilled Nursing facility or Long Term Care. You need to find out the cost for the big wakeup call.
When he starts begging and whining, blow him off. Tell him "you need to go to a specialty place to recover and get back to being able to move." Meanwhile, see an elder lawyer about dividing your assets, if he needs to get Medi-Cal. You can stay in your home and keep a car.
If you are already burned out enough to want him dead, you are in no shape (mentally or physically) to be his 24/7 caregiver. You need his doctor to give you a solid diagnosis and also a prognosis. You need to know exactly what is this disease, illness or condition that has made him so helplessness, so suddenly? What are the chances he can improve (if any)? There may be none.
Start serious planning, since your life is going to change forever. Don't go visit every day, call instead. Wean him off you being his 24/7 slave. He needs to get used to being in a facility. Get your financial situation figured out, and what you will be able to do (or afford).
Prepare yourself for living alone. Life as you knew it is gone. I'm sorry you are in this predicament. Nobody expects this type of thing to happen. But you have to face it and figure out a plan. That includes making sure he has his estate documents in order.
I wish you luck in getting this situation on the right track.
Kids are all grown, none living nearby and all of them it's time, Mom, take care of yourself now.
But, to address the situation, talk with his doctor about some medication to calm his anger and agitation, so you won't be subject to the verbal lashing-out anymore. This is for both of you. It's something you shouldn't be subjected to, but it's also a terrible mindset for your husband to be living in. This can be addressed with medication.
Second, as Dawn and Fawnby said, don't rely on the homecare promises. It sounds like his needs genuinely outstrip the ability of one person to address. So look into get him placed into long-term care, whether that is assisted living or skilled nursing. Tell the discharge planners that he cannot safely come home.
See an Elder Law attorney ASAP about how best to protect and possibly separate your finances so that he can get the care he needs in a facility but without leaving you with no resources to live on. Bring a list of your finances. You may need to pay for the facility at first and then transition him to Medicaid. I assume he is retired. How about you -- are you also retired, or still working?
Start looking for facilities and find out their financial requirements, so that when he is ready to leave rehab, he can go directly to one, instead of coming home and then having to be moved, which is much harder on everyone. You may find a place that is closer than the three-hour round trip you've been having to make.
While doing all this. take care of yourself. Rest, sleep, and whatever else you need to refresh yourself. Unfortunately you now have a new normal ahead of you. Take it step by step. Let us know how things go.
There is place 20 minute drive away, community run, the kind of place where he can have his own room and get the care he needs. It's small and pleasant. At least as much as such a place can be. They offer both transitional rehab and personal care home status. There is likely a wait list but that could be a solution that is the best of both worlds. I don't have to give up my home which is paid off and comfortable, my pets, and I can keep all my familiar supports in place. I am going to ask for him to go into rehab there once he's cleared from medical.
You are already overwhelmed and burned out after 4 months. Believe me, this could go on for YEARS! And, it's not going to get better or get any easier. It will only get harder as he continues to decline and lose any abilities he has left.
I know you are in shock. You never considered this. You don't know what the future holds, and you have medical professionals trying to convince you, "You've Got This". You Don't Got This.
I know you love him and you feel emotionally conflicted. Being a hands-on caregiver 24/7 at home is not the only way to love and support a spouse who needs professional care! Only you know your limits. You already know you don't feel you can do this. And you are looking for validation and support. I support you in knowing what you can and cannot handle. There is no shame or guilt in recognizing when your loved one's needs exceed your capacity.
Your husband tries to talk you into handling everything yourself at home. That is wishful and hopeful thinking on his part. Of course, he'd like everything to go back to the way it was. It is not. It never will. He is aging and weak and there is nothing you or he can do about it. You can both be sad about it, but it is your new reality, and he now needs to be cared for 24/7 by a team of professionals.
I'm so sorry you've had this experience. You are understandably frustrated, but you are placing unfair blame on your husband. He wasn't prepared for any of this either. He just wants to go back home and have everything be ok. Unfortunately, his current condition precludes that. You both need to take a deep breath and accept that your lives have taken a dramatic and unexpected change.
You will have to make hard decisions to do the best you can under the circumstances.
Natalie, most of us on this forum are from the United States meaning our health system is nothing like yours. We have the option when a LO is in Rehab to transfer to Longterm care. Thats either private pay or Medicaid, which is income based, if the person meets the income criteria. As said, we can declare "unsafe discharge".
Seems like Canada and the US have one thing in common, the Hospital staff try to get you to take the patient home. You have a long list...I don't think taking him home is an option now. You just can't care for him help or not. The facility you mention seems very nice. Tell them now, when Rehab is done, he needs to go to a Longterm care facility.
I kept escalating my complaints and lo and behold I am now dealing directly with the director of homecare and I have a brand new intake worker assigned who is ready to get things rolling when he comes home. My entire horrific experience of trying to cope for three months alone was the result of "micommunications" and they are so very very sorry. It will be investigated as a critical incident and I will get answers as to why this happened. Everything will be fine. I can likely get nursing care in three times a week and physio therapy at home and respite and and and.....
I DO NOT BELIEVE IT!
The system screwed me around once already and sent us home to unsafe and difficult conditions, burned me out, left him a T12 stress fracture and a partial compression of L3/L4. The doctors have still not figured out his anemia issue though he has had a CT, an MRI, ultrasound, scope down the throat and another up the other end scheduled for Tuesday.
He is no longer in pain. He is getting physio therapy twice a day. They have been giving him these baths where they put him in a sling and lower him into perfect temperature water and they are slathering his skin with ointments and there is always an aide at the push of a button. He has his computer and he's back at working hard on his writing and publishing. He actually seems quite happy though he claims he misses me and he misses his dog. The staff all seem to like him because he does not have dementia and when he wants to be, he can be very charming and entertaining. He calls it being nice to the help. And he is.
It is obvious to me that I did not and cannot give him the care he needs at home. It's also obvious a wife is not given the same consideration as the help. I was so angry with him when I found out about how he got himself released without involving me in the decision that I told him I was cutting the visit short and leaving because I needed to process this and have a good cry far away from him. [Not entirely fair to be so angry at him because the staff and doctor who let him go without involving me bear some responsibility and he didn't start getting nasty with me until exhaustion made it difficult for me to do what he needed but he deserves some blame for the situation.]
I have asked the staff to enter in his file that no matter what he says, I do not consent for him to go home without a full release plan that I have been consulted on and agreed to IN ADVANCE. Any release will have to include the social worker getting approval with specifics for homecare set in place and physio/occupational therapy having met with me and got my approval BEFORE he leaves. I will not take him home even if he pulls the AMA thing again. If he pulls the AMA thing again, and they release him without my approval and they let him get away with it, I will simply leave him in the entryway by the security station. and he becomes their problem. I told him the same.
No rush ahead of me to decide which way to go or what I will and will not agree to. He has been informed that after medical gets through with him, he goes to rehab for at least two months before he can even think of going home.