Hello. I hope someone is around and will read/respond to this. It is a very sad and lonely time. I have taken my first trip to my hometown/family since we moved to New Mexico nearly 3 years ago. I have left my DH in the care of his homeaid (who is WONDERFUL, but a bit excitable) who will care for him from 7am until 8pm. After 8pm. husband is on his own. He is not a wonderder, or prone to leave the house at night. He is too scared. I left Albuquerque on Saturday. I spent majority of Sunday weeping, as a neighbor and home aid are reporting how poor my spouse is doing..disoriented, walking around buck naked, unable to speak more than a word or two. I called this AM and my husband said he fell from bed last night (onto carpet..not too great a fall) and cried and sobbed and screamed for me to help. The neighbor and aid are so frightened that something will happen at nite when he is alone. We have removed all dangerous objects, stove igniters etc. I really thought he would be OK at nite, as he just stays up most nites anyway and watches TV as I sleep. Or he does the go to bed/get up 2 minutes later routine for around 8 hours straight. He seems to have taken such a huge step downhill in just the few days I have been gone. I am frightened that this is too much for him and I have set him on a downhill course due to my selfish desire to get away for a while.
Any comments? I am trying to hook up to a caregiver group in Mpls on Thursday. Should I go home early? I am SSOOOOOOO co-dependant!! I miss him as much as he misses me. In a way, it's sick.
Patty, it doesn't sound as if the trip is very enjoyable for you, the way things are going. Your husband seems to be having trouble adjusting to your absence, which can certainly happen with AD. (In the testing at the AD Research Center, they always ask me if my husband is afraid to be parted from me, since this is a common symptom.) I'm concerned that he will wander or leave the house to look for you, as he gets more confused and upset. It doesn't sound like a good idea to leave him alone for such a long stretch at a time.
Can the aid suggest another aid who could be there at night? Or would a neighbor pitch in? Could the aid stay there at night and take your husband to day care during the daytime?
Thanks for being there for me. I will be talking to aid this afternoon, and seeing if we can re-look at leaving him alone at nite. I have LOTS of respite time earned, as I have never left his side except to go to work. I am kicking myself to think he would be OK at night. What year did I think it was??? :) Damn this disease process and everything about it SUCKS! Turns a smart wonderful man into a child right in front of your eyes! SUCKS SUCKS SUCKS!
Welcome to my website. We're here to help with support, information, and ideas.
Remember - we do what we think is best with the information we have at the time. At the time you considered your trip, you thought he would be okay alone at night. That turned out not to be the case - don't beat yourself up about it - just get the help he needs. Call the agency and arrange for overnight help ASAP. You said you have plenty of respite time built up, so that should not be a problem. If it is, call the Alzheimer's Association - 1-800-272-3900 - explain the situation, and see if they can get help into your home.
Although you do need the respite, it may be necessary for you to cut your trip short to go home and straighten things out. Expect him to be upset and disoriented for awhile, as he is not used to you being away.
Next time you want to get away, you will know to make 24/7 arrangements for him. In our area, there are assisted living facilities/ nursing homes, that will take a patient on a short-term basis (a week or two) while the caregiver is away.
Patty, you'd have lots of respite time earned after just a month or two caring for an AD spouse!
I'm so sorry it isn't working out as well as you'd hoped. There have been two others who posted here within the past few weeks, who tried getting away for a well-deserved rest and promptly ran into unexpected problems.
It's not fair...
I hope the aid can help you work something out.
(A bunch of people are planning to go on the next caregiver cruise, with their spouses. Is that maybe something you could do, to get some relaxation time without having to worry about leaving your husband?)
Hi, Sheltifan...sorry it didn't work out. A lot of posters here always compare their LO to a child, and it makes a lot of sense.
My 5 year old grandson is playing in the next room right now, humming and doing puzzles on the floor. He has been "on his own" all day today, played with toys in the bedroom all morning, got his sandwich off the table and ate it, watched TV awhile after that, and then got out his Legos. I've been on the computer and puttering about the house, so really our paths haven't much crossed today. Unless I knew better, I would have said that he could have taken care of himself all alone. It didn't seem really like I needed to be here!
But I do know better. He is secure, because he knows the adult is here. If I did not have a physical presence in the house, I am sure that he would become agitated, and spend time wondering about me, not playing. Probably that's what happened to your husband, since the aide is able to keep him going.
It does really suck, this disease. Of course you can get out, but probably he can't be left totally alone. Good luck. yhc
Sorry it hasn't worked out Patty, I hope things are looking better today. When I had to go in the hospital for 3 days, what I did was make a video explaining where I was.. who was there looking after him, I also just talked and talked to him on it.. the people looking after him said he loved it and watched it all day long until they took him to see me at night. Maybe that would be an idea for next time, in addition to having someone stay with him? Best of luck, Nikki
Thank you all for the understanding and ideas. I especially like the video, I think he would have liked that. We did get care in at night for him, and he had a better day yesterday. Agreed to keep clothes on etc.
Off topic, but since this is my first venture into the "real" world alone for along time, I watch the interactions with other married couples and see just how little a "marriage"I have left. Not that I don't love, care and even still have fun with my husband. But it has become a caregiving role..filled with love, but a caregiving role non the less.
Patty, I am glad you were able to get someone to stay with him at night, must be a huge relief to you as well! I hope you can try to enjoy the rest of your trip now. I haven't yet taken my first trip without him, well for that matter I haven't taken a trip in years LOL Yes, I think we all feel the same way about our roles now, so sad but true. Many on this site refer to themselves as married widows... how tragic
I went out today with my nephew for 5 hours, count them 5 HOURS!!! Just he and I. Now that Lynn is more like his ol self, thanks to the seroquel! my sister who lives here feels comfortable "watching" him. She said hey, take your nephew and just go enjoy your day! OMG!! I didn't know what I wanted to do first LOL
I wasn't sure how he would react, as other than the hospital stay I have never left his side in 4 years!! So I figured the video I made him worked so well before, why not make one for today too. It only took a little while, and I did it in a way that I can edit it for the next outing.
Sis said when he got up, she told a lil white lie that I had to take derek to the doctors. I had already left a note, she just added the doctor part, popped in the video and he was set for the day. She left it playing in the background the whole time, so whenever he asked where I was he just went and watched it. Worked perfectly. So much so that tomorrow I am taking my niece out for the day!!! YIPPPPEEEEEEEE!!!
First off, I am back from my vacation! My husband, while glad I am home, seems no worse for the experience.
While I had a rough start, I ended up relaxing and really felt cared for and loved in the arms of many of my family members.
It was hard being back in my home city..everywhere I turned was a landmark..our first date, our first apartment, where we hung out etc. Bittersweet.
I was honest with my family regarding some reasons we moved. I knew before any DX something bad was wrong and I knew I needed privacy to deal with it. Just my way.
My husband did better with more supervision, expressed to me how hard it was to get along with his aids..said they were hard to get along with. (they are angels from above)
Anyway.. here is my very grateful message to you all THANK YOU FOR BEING THERE! I have better ideas now for next time (and there WILL be a next time) and I expect much less anxiety, at least on my end. Thank you all!
I wrote a poem after my first vacation without my husband....I am including it here for you to perhaps share with me the emotions this invokes....
Vacation Time
A weekend mini vacation To a special place we have always Loved to visit, The anticipation of time together, And shared enjoyment of the sights, the Sounds, the relaxation of connecting with The one I love, the joy of leaving our Responsibilities for a brief time.
But I forget, We are not going together. I pack a suitcase just for me, Trying not too successfully To anticipate the time for myself.
My sweetheart and I are not Making this trip together, He will be in the place he knows As home now. I doubt that he knows where he is, Spending his days in walking endlessly Along the halls, Stopping occasionally to rest and drop off To sleep dreaming those dreams that May or may not be meaningful to him.
I feel a twinge of guilt That I can still anticipate and enjoy the Pleasures of this world. Even though the pleasure is dimmed by The empty place in my heart, missing The companion of my life and his presence As I absorb the sights and sounds Of vacation time.
Yes, I will pack my suitcase, And try desperately to forget the Past vacation joys we had together As I put on a happy face and hide My sadness from the world.
I am actually leaving tonight with my daughter to go on college tours for 4 days. I am very nervous since this is my first time away from DH. I have hired a nurse to be here 24 hours which he knows and she has been working with us since last year. Since we have moved our bedroom to the main floor of the house is it a good idea to have the caregiver sleep upstairs? I bought monitor on yesterday.....he hasn't wondered outside the house but I am looking for a response to let me know what I probably could expect.