I haven't posted in a while. Things have been crazy with work and getting ready for the holidays. DH entered the nursing home just before Thanksgiving. He was adjusting well, but he continues to decline. I was going to try to bring him home for Christmas, but it looks like that's not going to be possible. The nursing home reported that he's been running a fever the past couple of days. His gait has been very unsteady, to the point where they are keeping him off his feet. They think the unsteadiness may be because of the Haldol he's been getting and they've cut back the dosage, (replaced it with Aderal) but they're not sure that's the cause.
The nurse who called me this afternoon advised me that it may be time to reconsider my advanced directive. I had signed it with the provision that they do whatever possible to keep him alive if his health starts to decline. But I know that I don't want him to be kept alive with tubes and machines. I'm sure he wouldn't want that. It was just such a shock to hear her tell me it's time to reconsider. She said that he could take a turn for the worse at any time.
I'm thinking this may be the beginning of the end, but I don't know how to cope with this. I hope he bounces back to at least how he was when he entered the NH, but I'm doubtful. I took the kids with me to see him last night, and he looked awful. They had him in a chair, but he looked so uncomfortable, like he's forgotten how to relax and lie back. He was sweaty and barely conscious. My 10 year old seemed alarmed at how bad he looked. I left a few minutes after we arrived.
The nurse who called tonight said they were considering sending him to the emergency room; his temp was 99+. But I told her I wasn't sure how to pay for an ambulance, that I would have to come get him. She reconsidered and said they'd monitor him through the night, call me if it gets worse, and get a urine sample to make sure he doesn't have a urinary tract infection.
I'm disappointed about Christmas, but to be honest, I don't know how I would have managed caring for him. He's completely incontinent and wanders constantly. I can't life him by myself if he starts to fall. I was struggling to care for him when I took him to the NH, let alone now.
I just feel totally unprepared for this. I know that in a way, he's been "gone" for a while now. But I feel completely unprepared to let him go. I need to know he's "here" even though he's not. I hope this makes sense. I've been crying off and on since this afternoon. I keep thinking this is the beginning of the end. I feel like I can't be here without him. But I also don't want him to be here for long in the condition he was in last night. It's no way to live.
Sorry this is so long. I just needed to "talk" to people who understand what this is like. It's worse than hell. I feel like I would curl up in a ball and die. But I have to take care of the kids. I have to make Christmas for them, even though I've probably never been less in the mood. We got engaged on Christmas Eve 11 years ago.
I'll keep you all posted. Thanks for listening to my depressing rant. I can't imagine a more caring and understanding group of people.
I hope you all have a peaceful and enjoyable holiday.
Kelly, I’m so sorry that your happy memories of Christmas Eve 1997 are far overshadowed by what is happening to your family now. My husband is still home and we don’t have kids, so I haven't had to make the kinds of decisions that your have. The worse-than-hell situations that we’re in will not last forever. May God give you courage and hope in the midst of this. Have a blessed Christmas.
I wish I could do something to ease your pain. I only have understanding, support, and hugs for you.
I don't know if you were here when Tony and his 3 boys were going through the same that you are now. His youngest was around the age of your oldest. They somehow managed to get through by holding on and supporting each other.
Keep the memories of the good Christmases and know that there will be better days in the future.
Dear Kelly: The decision, of course, is yours. And, no matter what, you will second guess yourself a 100 times over. Although our children were grown, I have been thru this so I understand your conflicts and profound emotions. I cannot do other than to extend my cyber-hand and heart to comfort you. I hope you have people around you, you need their loving support & so do your children. Betty
If you haven't done it, it is time for you to call your local Hospice. Even though he is in a NH, they will usually help you manage your DH care and the decision making that comes with this sad phase of life. You have so much on your plate, please go out and get all the support that is available.
Hospice will not only help your DH but they will help you and the children deal with what is happening now and what will happen in the coming days/weeks.
Kelly, although I have not yet been through this, I'm seconding Hospice. If nothing else they will tell you the truth about what stage your husband is in, because they have seen it all before. And they provide counseling for the family in an area where they are the experts.
You and your family are in my thoughts and prayers. Please take care of yourself and your children in this difficult time.
Kelly, you have my deepest sympathy. I know what you mean about needing to know he's there ... it makes perfect sense.
Catherine is right, you should talk to Hospice. They can help you and your children, a lot, as well as providing a lot of care for your husband. Too many caregivers wait far too long to bring them in for AD patients.
Kelly, i also 3rd the hospice suggestion. an evaluation can help you and the kids and get him added comfort during this time. I would also see if the haldol or even aderal is necessary at this point. he may well have a UTI and he needs meds for that. followup on that urine sample asap- i would carefully reconsider giving any other of those major meds other than whats crucial. sometimes they can rebound some after they get off the haldol and such meds that can cause major side effects. hold strong, there are lots of prayers for you during this trying time, Divvi
Kelly, The hospice people are very compassionate and understanding and so much help at a time like you are experimenting. My thoughts and prayers go out to you. Hugs--------
Kelly, I have a 9 year old grandaughter and I can just imagine what your little girl is going through. They feel and love very deeply at that age. I'm sure she was very alarmed to see her Dad like that.
All of us here want to help. Wish I could give you and your children a comforting hug.
Kelly, I also am wondering if you posted and I missed an update on your husband. I want to share with you an incident that has happened with my husband this week as it may help you with understanding your husband's present condition. On tues I went up to my hsuband's nursing home and was told by two CNA's that I trust that my husband was taking a longtime to chew and swallow his partially ground up food.was losing weight. They asked if I would talk to the head nurse to see what could be done to help him eat better and drink more fluids. I discussed it with the head nurse, we had a speech therapist do some testing and evaluation on his swallowing mechanism which resulted in him being put on pureed food. The doctor then prescribed some blood testing and found that my husband's sodium levels were very high. We decided to try and interveneous saline drip to see if he could recover his sodium levels. He was on it all last night and is on it all day today. Kelly, it was as if a miracle had occurred!! His is very alert today, his eyes were wide open, he even attempted a word or two which he hasn't done for a long time He picked up my hand and held it staring at me for a long time. Of course, we have to see the ultimate outcome and see if he can sustain the water levels without a drip.
I guess my purpose in relating this to you is that sometimes a small intervention can restore what appeared to be the beginning of the end. My husband has had other serious symptoms of end stage Alzheimer's but then he has recovered to be able to live fairly comfortably . His quality of life is very poor but I am attempting to make decisions as to further treatments based on if the outcome will be an improvement in his physicial onditionA long time ago we agreed not to let a intervention such as tube feeding or artificial means to keep us alive without hope of being able to live without the artificial invasive procedures. I am sure there will come a time when I will have to make the ultimate decision not to do anything except make him comfortable and allow hospice to do that which they do so beautifully.
Kelly5000, where are you. I have been thinking of you since Christmas. Hope things are going better for you and your little family. Let us know as we all want to support you in any way we can.