After Kathryn's last stay in the hospital, which was caused by her meds she had a big decline and did not rebound from it. She is declining daily now it seems like. Her vocabulary is pretty much gone and she needs help eating too. She has lost 8 sizes and 70 pounds and when you look at her it looks like her skin is coming off. I do still take her to publix (and I can't say enough nice things about them) They ordered a special wheelchair just because she needed it and has offered to do our shopping and deliver it to the house at no extra charge. I used to think that Kathryn was like a 60 year old toddler but that was wrong. A toddler learns and grows everyday, our loved one don't. They start knew everyday. If they touched something hot yesterday and got burned they don't remember it today. We have to watch them to make sure they don't touch it again.
Hospice has removed her from all of her meds other than Seroquel, Miralax and Pain medicine. I still have her at home and plan to keep her here as long as I can take care of all her needs. She no longer knows my name and when asked what her name is she can't tell you what it is either. But she will answer to it. She can't remember how to sit down and has trouble lifting her head even if I assist her.
I took an early retirement to stay home with Kathryn on July1st. July 15th, was the 4th anniversary of my Mother's passing and as I was thinking about my Mother I guess it really hit home that Kathryn is going to die. I suddenly was overwhelmed and I felt like I had already lost her. My chest hurt, I had trouble getting air and tears were just running out of control. I don't know how any of those on here that has already lost their lover one survived it. I can't imagine my life without Kathryn in it. We have been so great together. This damn diseased has taken over half of our married life now and I know is going to take her away from me as well. I'm not sure I can bare that.
After all this time and all that already happened how can it still hit you so hard?
Jim - my heart goes out to you. I'm reading this after I've helped my dh brush his teeth, shave and shower and finally put to bed. As I was coming to the computer room the thought ran through my head that it was like putting my kids to bed years ago. Then I realized that they learned to do all those things themselves and I didn't have to do it for them but dh will only get more dependent. He is in the process of dying and there is nothing that will help. We all know this is coming but until it does I don't think it will really sink in. One day at a time, my friend that's all we have. Try to enjoy what you can of your dear Kathryn. She is lucky to have someone who loves her so deeply. Hugs to you.
Jim, my heart goes out to you too. Losing them is very hard. Gord and I were married for 2/3 of our lives. He has been gone almost 9 months now. I find that family and friends are starting to get a glazed look when I talk about him so I have to find somebody else. I am now waking almost every morning thinking that he is on the other side of the bed. What you are going through now is incredibly hard. I don't know if this is any harder. Maybe just an extension of it.
I think we bond with them so deeply because we have cared for them for a long, long time, and our compassion and tenderness for them in their lostness and pain etches deep in our psyche. It's a combination of love for a child, which is what they have become, and loss of a mate. It's a double whammy. In the process, we lose much of ourselves,
Jim I am so sorry for the deep pain you are suffering. and jang*, I promise you, if I ever met you, I will never get that glazed look. My brother in law Frank lost my beloved sister Dianna exactly one year ago July 16th, and he is still in such pain. He re lives it over and over, asked me the other day if she ever squeezed my hand while she was in her semi coma. Broke my heart.
Jim I just do not think we CAN keep it from hitting us. At the risk of sounding trite, somehow, we must know, that there is "another side". We will never get over missing them, but hopefully there will be days that we can smile and smell the flowers. My Dado is declining quickly and when I read what you read, I want to try even harder to make these waning years of his life better.
Jim, so sorry for your deep pain...you are going through an incredibly hard time, you are a wonderful care giver. This disease has consumed all our lives.
Jim,it seems this disease is hitting me harder each day also,because we know there is only one end to it. I can't imagine how you must feel at this advanced stage.your love has gotten you thru this far and will carry you thru,you two are so young.it's just not fair.I only hope I can give my DH the extraordinary care you give Kathryn.MY prayers are with you.
Jim--I, too, lost my parents during my husband's illness (my Mom shortly before his dx and my Dad, last year). Obviously, I think that compounds one's sorrow and I feel that I was never able to adequately mourn their losses because I had to be so focused on caring for Steve. My best friend recently lost her Dad, and she finds comfort in attending religious services on a daily basis to honor her Dad's memory. That was out of the question for me. This is another unique problem when younger-onset dementia hits.
Jim In reading your message I can feel the pain that you are feeling and the hurt that is building up inside you. Everyone here either has gone through what you are going through or is right along side you going through much of the same journey. Comfort will come in the knowledge that once passed they will never suffer from this dreaded disease again. It is bittersweet but it is of comfort to those who gave their all to care for their loved one. The sacrifices made would be done all over again if necessary because of the love shared. We as a human race love and find joy and peace in that love. You will find peace again because you will search until you do and that my friend is just plain human and they way we are wired. We were created by a loving Creator and we therefore are wired to love all others as we love ourselves. Peace be with you as you travel this road of life and look to the future as each day passes and a new day begins. May the sun always shine down upon you and all the others who travel this earth. Blessed be the Lord.
Jim, indeed the sorrow you are feeling is felt by most of us here. it may be you are having a bit of panic attacks under the stress of finally seeing the reality that this is a fatal outcome. it has happened to me more than once as well. its our way of coping i think so we dont really go downhill along with them. your acceptance will be of benefit to you even though its such a frightening revelation. you are processing the idea that the disease is very real and we can no longer hope for a better outcome. its very normal friend. take care and if you feel the need to get a bit of pharmaceutical releif from the stress please speak to your own dr if you dont feel you can cope. divvi
Anchor 20, I know the pain you are experiencing and it is overwhelming. I was able to share some of these same thoughts with family members and a friend and that helped somewhat. If you can find a professional specializing in this area, that could be a great help to ease your burden. If you have pastoral counseling that might be a godsend. Losing your loved one is devastating and you will need to talk to someone and/or have medical help for you to cope. Take care of yourself. jerseymama*
I have to say - how wonderful about Publix. We have found such caring people at our Publix too. They are very kind to DH, who goes there 3-4 times a week. We use their pharmacy, and that staff is awesome as well. If you have time, go on their website and send a note to the corporate office telling that how extraordinary they are! I did that, just to let them know that their kindness to my husband is so appreciated.
Your post brought tears to my eyes - lately, so many posts here do. You are right, it's like a toddler -- but then again, not -- because our loved ones are not going to learn and grown and have a future ahead of them. So sad.
I am so sorry your heart is breaking. I hope you have good people around who can help.