18 horrible days ago I placed my 63 year old late stage 6 ALZ husband in a NH. We have Kaiser and he also has VA- but Medi-Cal is paying the bill as Kaiser doesn't. No ALZ Facilities on Kaiser's Contracted list, and they dictate, therefore I chose the best NH I had toured. My husband has declined- can walk only a few steps, more behaviors, drugged and drugged with side effects, now on purreed foods as he is almost unable to swallow. He needs absolutely all ADL's done for him. He did not even know I had placed him- thought we were still home until yesterday. Now all he says is take me home. I have been there trying to take care of his needs up to 8 hours per day, as he wheels himself around in a thing called a "merry walker," calling my name. At home he never knew my name. The guilt is almost UNBEARABLE, I cannot stop crying, I am absolutely ill about what I have done. He has fallen 7 times in 1 week, (he did fall 2 times in 1 day prior to being taken there.) I am so sorry I placed him. It was easier taking care of him at our home. Now I am constantly on edge and worried and blue, sad, crying, etc. They only know to drug, drug, drug, why did I do this! My poor husband was 99% confused at home, and I did everything for him, but now this is worse. I feel heavy hearted and brokenhearted. He was placed on Hospice care, and the Hospice Nurse asked if I could care for him at home, with an occasional nurse's aid. Everything I look at at home reminds me of him, clothes, toothbrush, I miss my husband even though he is late stage ALZ. He still says he loves me 100 times per day and kisses my hands every moment. His doctors, my children all said it was time- but this is worse- I want him home- help- someone give me some advice please. I feel frozen, sad, helpless.
I cannot even begin to imagine how emotionally wrenching this has been for you. Is the nursing home not attending to his needs (ADL's) properly? It sounds like you are doing the work 8 hrs. a day that they are supposed to be doing.Which should not be the case. Or is it that you are afraid to leave him for fear they won't do what is needed?
We all want to take care of our spouses for as long as we can, but if the doctors said it was time, and from your description of his needs, it sounds as if it definitely is time. The grief and broken heart you are feeling is normal after placing a spouse. I hope those who have been through it will be along to tell you of their experiences. It has not been easy for anyone. In time, (I have been told), you will be better rested physically to be able to be with him at the NH and give him the emotional support he and you both need.
Coincidentally, my blog tomorrow is about caring for the physical needs of our spouses and how debiliating that can be on US, the caregivers.
Ckkgram, talk to your doctor about what you are going through......maybe there is something you can take to get you through these tough days.
Other than that, be realistic with yourself....can you really take care of someone in his condition and also maintain your own health and wellbeing?
I am going to preach my old sermon...."Do Not Let This Disease Take More Than One Person"!!!!!
Do you not deserve some quality of life? Would your husband want you to sacrifice yourself taking care of him? Do your children need to lose two parents?
There is heartbreak when we have to make the ultimate decisions when dealing with this disease...that goes with the territory.....but when you come to the realization that you have done all that is humanly possible, make the decision and go on.
Give him time to adjust, but in the meantime, voice your concerns to the administration at the NH, his physician and the social worker. But, most of all, take care of yourself......you are important.....you have value.......you have a future.......
I went through the same reactions in my decision to place my husband in a care facility. The thing that helped me the most was the knowledge that if I got sick, or had an accident, there would be no one to take care of my husband. I owed it to him to provide the best care available for him, and I knew that I was no longer able to give that. The couple of times before he was placed that I got sick with the 'flu, I could hardly attend to him; and we were both the worse for it. Sometimes it's just a practical decision. Hang the guilt. It is what it is.
When you do the best that you can...It is good enough...You should not feel guilty. You are in another phase of this journey and it's time to take care of yourself. (((HUGS)))