For me, that was huge. When the call comes with an opening that will be another huge decision. My D H is spiraling down so fast. I'm really feeling overwhelmed. He is incontinent of urine, wearing undergarments, and still using BR with poor results. I'm doing a lot more laundry and lots of cleanup in the bathrooms. He's having problems putting his shoes on and other clothes. I've caged his shirts to pullovers, next will be elastic pants. His chatter is nonstop. Endless questions over abd over. My blood pressure continues to rise and I have headache s a lot. I am tired. I know many of you have gone through much worse than this but I'm not sure I can.
Ky - "My blood pressure continues to rise and I have headaches a lot. I am tired".
Don't hesitate for a moment when the phone call comes! The next call could be for an ambulance to take YOU to emergency with a heart attack or stroke or..... I was at the same point and his doctor said "That's enough you have gone as far as you can it's time for other to take over and you rest and get well".
My life and health is much better now, in all ways, than 3 months ago. When I go back and read my notes, from just this summer, I can't believe what or how I was dealing with everything.
You are at the end of this part of this disease, time to move on to the next stage.
Ky, we should not stop to rationalize the what if's when our own health suffers from caregiving. its a line in the sand that is one of the top reasons for placement. I also agree to take the room. divvi
Sometimes we forget that there are no guarantees in life. The best that can be done, and you are doing it, it to make a decision based on the circumstances at a particular place in time. Take the room.
There is no way of knowing how your husband will respond, but going down this AD road most of us reach this crossroad sooner or later and make the same decision. You have taken the step to submit his name, and that first step is often the hardest. Try not to second guess yourself, but self talk that this is a solution for both of you.
It will not be perfect and it is good to realize that, BUT it is an improvement over the situation that is robbing you of your health and sanity. Amber and divvi offer good advice and I agree with them.
Thank you all for the encouraging thoughts. I feel a little better knowing his name is on that list, a little light at the end of the tunnel. God Bless each of you!
Dear KY caregiver, would you mind if I asked you some questions about how you reached your decision? I am struggling so much right now because my health is starting to suffer (same things, headaches, high BP). Once Marvin (DH) was crying and told me he was so afraid he would have to go to a home and I promised him it would never happen. I probably shouldn't have made that promise, and I've been trying so hard to keep it, but I am beyond exhausted. Thank you, Pam
Hi Pam - When you feel you can't do it any more is when you place you LO.....and then probably 6 months earlier. Your health is a big marker and I can't begin to tell you how much my health has improved in just 3 months. Though any little thing will still set me off, for the most part I don't feel beat down like I was feeling. I still have a long way to go.
Other members will also tell you how once they are placed and you get to go back to being a wife again how much your relationship improves. It is just too draining to do this 24/7 and I can't imagine doing this if I was in my 70's or 80's. I was in my 40's and 50's.
Hubby is stage 5 - 6 and went in because of behaviours and he knew and he was mad but if they were thinking with a brain that wasn't damaged by this disease they wouldn't want you to kill yourself looking after them. I told my daughter that if I ever came down with any condition that required her to be my caregiver that she was to "place" me because I don't want to be a burden on anyone now that I've experienced what it is like being a caregiver 24/7 for years. Wouldn't wish this on my worst enemy.
Thank you Amber, I can't imagine being older too. My husband was diagnosed when I was 50. And it's getting harder every day. I just don't know how to transition him from home to a facility. Do you tell them before hand? Just spring it on them the day they're moved? I totally understand your statement "any little thing will set you off" I am scaring myself sometimes with how upset and out of control I get.
I started with respite care for 1 week then longer. For final placement he went to bed fine and in the morning couldn't walk because of being very dizzy. Went to emerg and got admitted to acute care and from there, I had set up 6 week respite, he got transferred over to LTC and while he was there a bed came up and he became permanent so I didn't have to "trick" him into going.
I read where some just drive them there and that's it. If they told them before hand they would never get them in there.
For respite: The first time I told him the night before and he was upset the whole night and though I got him there it was a horrible night. From then on I never told him till the morning he was going. I kept reminding him how hard it was on me looking after him all the time and did he want me to get even more sick and tired but it didn't register with him.
Pam, I'm so sad you are also at this point. That is thinking of placement. This has been a long and hard journey. Already into my 8 th year. My DH has been on a downward spiral at high speed the past few months. He is now incontinent of urine, bowel incontinence will be along soon. He is more confused every day, some new thing he has forgotten. He needs help getting clothes on and off. He doesn't do as I say or ask easily anymore, everything is hard. It's got to the point I can't take him out, he argues with me in restaurants or wherever we are. Also problem with the incontinence with going out. His health is getting worse, just this week he has started on insulin and blood pressure mess. My health is getting worse, blood pressure rising, headaches. I have NO help unless I hire someone, which I di 12 to 15 hrs a week. I haven't made the decision to place him yet, but I feel better knowing his name is on that list. When they call with an opening, I can take it or pass for the time being. I love my husband, we've been married 43 yrs, but the time is coming when I just can't do it anymore. I pray for wisdom to make the right decisions re my health and his well being. My DH never made me promise I wouldn't place him, but he knows I would do what I think best for all. I hope you can do the same with peacefulness in your eart!
I believe we need to emphasize to the newer ones to never ever promise you will not place them. So many things can happen that makes placement necessary. My husband made me promise to place him vs killing myself caring for him. He still remembers that and if he forgets, so be it. But I will not feel guilty when he is placed because of a promise made before I knew where this disease goes. Placement has nothing to do with abandoning them or lack of love. The opposite - they are placed because we want the best care for them that we can no longer do 24/7 and/or our health warrants placement.
Also, the next step become their advocate can be just as hard and draining.
Well said Charlotte! I know a lady whose father made her promise not to put her mother in a NH & now she is practically killing herself trying to care for her. I was very fortunate that by the time I placed my DH he was unaware of his surroundings. He would ask for me & the staff would tell him that I was, out shopping, getting the car fixed, running errands & that I would be back soon. I have no guilt feelings, I knew it was the best solution for both of us & so did our kids & all the people who knew what I (we) were going through.
Like Amber, my husband was already sick with a bad stomach virus and we transferred him directly from the hospital to ASL two weeks ago. They asked me to visit for the first time last Saturday - he didn't know who I was part of the time and part of the time he was very agitated, wanting me to pack his things up and take him home. My daughter, 18 month old grandson and I went back yesterday - found a strange lady sitting in DH's room and he was sitting in another person's room. Based on his behavior during the visit my daughter (who is 8 months pregnant) was very upset and we have made the decision that she won't go back to visit until he is better settled. I talked to his nurse today and she feels I need to not visit very much until he is reconciled to his surroundings. Main issue is he is refusing to eat. Praying it all gets settled soon. Even though he's not at home any longer he's always on my mind wondering how he's doing, etc.
Update: they have not called with a room yet! But I have decided even if they don't for a few months I am focusing more on me. I have hired a couple of women to help me more. I will be going out of town more this summer, and actually taking a vacation, instead of taking my DH. He doesn't enjoy it and ruins it for me. I will see that he is taken care of, but I will have vacations, yes plural!
KY caregiver, I have made the same decision in regards to my DH. I don't want to feel resentment for caring for him, so I decided to continue our retirement dreams, only by myself now instead of the two of us. I pay his sister to come and stay at our house and with the help of home support for personal care, I manage to get away 2-3 times a year. (so far anyway) and I can't tell you what a difference it makes to my life. The respite is essential for me to carry on and have something to look forward to. His name is on a list but I am not impressed with the care they provide over how I can add meaning to his life (as long as i can some breaks) That is where my life is right now.
A bed became available for my husband at a memory care facility and I have taken it. He is to move in on Thursday. Although I know it is the best for him and the best for me, I feel like the floodgates of all the sorrow and sadness and exhaustion have just opened up and I can't stop crying. I feel like such a Judas, so disappointed in myself that I can no longer care for him at home.my sorrow just comes in waves and waves and I feel such deep sadness and despair. All of this time I have been 'strong' but now all my defenses have been breached and the heartache is almost unbearable.
jennyf, I understand your sadness and despair and remember having those feelings. However, I encourage you to not fall into the trap of disappointment and guilt about not taking care of your husband at home until the end. This is a brutal disease and you can feel proud of yourself and the terrific job you have done in taking care of him while he was at home and you will continue to care for him, but you get the best of him now. I consider placement just another stage in the care of my DH and have found that he is much more calm and content in the care facility where he now lives. He needs less behavior meds and is less agitated than when he was at home. They engage him in activities everyday - at a level he can understand - and he considers that place his home. Of course, I told him that we both live there because there was a lot of work that had to be done on the house and that "your room is here and mine is down there". He never asked to see my room and I visited him everyday so, to him, I was always around. You will be in my thoughts as you go through this next week. Please be gentle with yourself.
jennyf, I remember that sorrowful feeling so well from 3 years ago when I placed my DH. Since our minds are normal we do what we have to do when we reach our breaking point. Although it will be difficult for you, you are just doing what you feel is best for both of you. After the move in and the adjustment period for both of you I believe you will know you did the right thing. You can visit when you want to . The care facility workers get to go home after 8 hours while you have been working 24 hour shifts for a long time. We will all be here to support you all the way. Hang in there jennyf, you are strong and definitely deserve a less stressful life. Try to just think about one day at a time but cry when you feel like it. I hope it all goes smoothly for you and I am sending a heartfelt (((hug))) to you.
Anything can happen, but the statistics are in your favor. It will be better for him--and for you as well. Is your heart broken, have you cried a river? Do you love your DH more than I loved mine? Have you tried harder than I did? My kids kept saying, "Please, Mom, we don't want to lose you to the same disease." They saw the toll it was taking on me. All the cells in my body felt like they were slamming into each other. It did cause me to have serious health issues, the sadness of placement was overwhelming. I'm a strong person, but we are human and we can only be so strong for so long and then our human body just burns out. Let yourself feel all these emotions, they have to be felt to leave your system. No one thinks you're a Judas, no one here will judge you in a negative way, because YOU ARE NOT ALONE. Sure, you feel that way, but thousands of people understand and admire you for your courage to do the unthinkable because we've been through the same travail and our thoughts are with you. Feel the strength we send you. Betty
I don't know why so many of us (myself included) feel like we can take care of a dementia patient alone. If ever a situation fit the phrase "it takes a village", this one does. It's not a disease like cancer, for instance, where the patient can participate in their own care and make decisions. It is a superhuman task and we need to realize that it's more than one person can handle, period.
Update: I got a call from memory care but didn't take the room at this time. Things are better. I have hired two new caregivers, and have been getting out more. I went to smoky mountains last week for a few days. It did wonders for me. My DH did fine. He has forgotten I was gone already. It was very expensive, but not as much as assisted living facility. I have arranged for these ladies to stay again with my DH next ,onto. Ill be spending two weeks in Florida with my children. This is working for now. Ill just take it a day at a time. Maybe next time they call , things will be different but right now I'm ok.
Good to hear that things are looking brighter for you, Ky caregiver. A little time away from caregiving is good for the soul. I hope your two weeks in Florida will be as enjoyable as your trip to the Smoky's was. Enjoy!