I took DH to the walk-in medical center today. I was trying to clean his behind, but it just kept coming and coming (sorry to gross everyone out). I thought he needed an enema or something to clear his colon, but the Dr. said his colon is fine, he's just "letting it go". I put an adult diaper on him for the first time today when I got home. A new low. A new stage? I honestly don't know if I'm going to be able to manage this phase. I want to "erase" the image of DH lying on the exam table while the Dr. cleaned his butt. It seemed to take forever. I truly feel I'm not "equipped" for this. I think sometimes I died and went to Hell and don't realize it. Sometimes, I can't imagine Hell being much worse than this.
Sorry for the "downer". I'm having a pity party tonight. Wanna join me? I keep thinking "Where's the dignity?" DH deserves to have dignity. This is a man who not so many years ago was vibrant and competent and so intelligent and charming! I'm angry and disgusted and guilty and shamed that I'm so "incompetent" at taking care of him. I can't bear the idea of ever putting him in a nursing home, but when our 10 year old said that he wishes he had a Dad and I told him he has a Dad, a lot of kids don't have one, and he said it's worse because his "Dad" is gone but still lives with us, I wanted to shoot myself. It made me think it would be better for the kids if he were living somewhere else. I don't know. Maybe it's better for him too.
Ok, I'm done venting and being morose. One thing that I brought up at the Dr's visit is DH's swelling feel/ankles. I've noticed this more and more lately, but the last couple of days, it seems especially pronounced. I was wondering if any of you have experienced this with your LO's. Is it part of AD? His blood test was normal, but he goes back Monday for followup. He also has a rash on his arm for which the Dr. prescribed Prednasone, but I'm reluctant to give it to him, as I'm afraid it'll jeopardize his getting his drug trial injection on Wednesday. Sigh...I've never heard of swelling being associated with AD. DH's brother has bad foot/ankle swelling, but he doesn't have AD; He has Muscular Distrophy and heart trouble. I'm really worried about this and need answers. Any advice is appreciated.
Kelly-here is what keeps happening to my husband. His heart starts beating erratically sending him into congestive heart failure. His feet, ankles and later his entire body swells. I think it is his poor brain sending mixed signals to his body. The brain begins firing correctly and everything goes back to normal. I am an RN and the Hospice nurse agrees with my theory. If you can find Tony's blogs on EOAD I think you will find them helpful. Because of youngsters in the house he had to put his 47 year old wife in a NH when he could no longer care for her and his kids.
First of all, I'm glad you vented all those feelings. I fully understand everything you said. I don't know if I am going to be equipped to handle the diaper stage. And it makes me so angry that there is such a loss of dignity.
As for the swelling, you mentioned a trial. Sorry, I don't always have the time to keep up with every post, so I'm not sure which trial your DH is in, but you mentioned injection, so I'm wondering if it's the same one Sid is going into - the Bap infusion? Has he had his first injection? If he has, you should definitely tell the trial doctors about the rash and swelling. They need to know of any change or reaction.
If he has NOT had an injection yet, I would tell them anyway. They have to know everything in order to be able to determine what to do about the injections. The walk-in clinic doctor didn't know enough about your husband's history to be treating him beyond that one emergency situation.
My husband had swelling in his fingers this week but not his feet. The physical therapist noticed it and asked me what he had to eat. Come to find out I had given him some canned soup and he had bacon in the morning. PT said that probably caused it. Next day he was fine so I am going to watch his salt intake. His BP is fine.
It must be so hard w/young children Kelly. My heart goes out to you. My g-daughter is 9 and asked me the other day if Pop was ever not sick. I wish she remebered when he was the apple of her eye when she was a baby. He use to pick her up from the sitters and spend lots of quality time w/her before FTD hit.
Kelly - Has he been walking alot lately? My DH got "very swollen feet/ankles" when we went on a cruise back in March. His PCP cut his BP to 1/2 & he then did fine & no more swelling since.
If you call the "trial people" & tell them about the Prednasone, they can let you know if it's okay to give -- prob won't be able to do that til Monday though. :(
I am so sorry for your new restroom issues. I too am dealing with the wiping issue, altho my DH is not incontenent in bowels yet, he doesn't remember alot of times how to wipe. He too was not so long ago a goodlooking, everybody loves him, kinda guy...very personable, etc. And I too think this disease wears on them at times, but hopefully your DH will be okay a bit after dealing with it. I found that it helps to keep "wet wipes" (larger sized ones) in the restroom on the back of the toilet -- very handy & then toss in the trash. We are always taking the trash out here!
As for your little ones, my heart breaks just reading this...our 24 year old is living outside the home, but we talk daily & she too is struggling with her dad being "gone" in some respects. They are grieving just as we are -- I am sorry your kids have to watch the day to day issues, just as we do. That is very very hard on a young person. But, you have an opportunity to show them what "for better or worse" really is...hard to do some days, but I suspect they'll remember your kind & caring ways much later in their lives. Hang in there!!
Dear Dear Sweet Kelly, Please do not think you are not competent in caring for your husband. Everytime I read a comment from you it breaks my heart, I can't image the stress you have caring for someone with dementia & trying to care for small children also. I can't blame your little guy for feeling as he does, bless his heart. You and your family are in my prayers. Kadee
Kelly, you will find the inner strength and tolerance to deal with your DH issues. it doesnt come easily and at times you will feel overwhelmed with the added stressful issues. your comfort will be your children during these times. many of us have been thru the poo issues. it is natural to be distressed seeingyour DH so dependant on your care. its another phase of this dreadful disease. hugs to you and your dear children. divvi
I raised my babies in the cloth diaper era. You know what I loved about dirty diapers? If you got those white you really knew you had done something! Hang in there all of you on poop patrol!
thank the makers of adult diapers. hallellujah! now that would send me over the edge most definately. divvi poop patrol isnt the worst thing just the most disgusting.
Kelly, give him immodium every morning. That has been a godsend for me. When my husband went into the hospital last week of course they stopped it and gave him heaven knows what and he was pooping all over the place and left lying in it in bed. When he came home Wednesday I gave him one, and one every day since - just one little pill! - and he's now regular and taking himself and wiping himself and so on. That and the pull on depends and pull on/off trousers so he can get down to business quickly.
Because of all the time I've spent at the zoo, I'm quite used to the smells and the poop and the kids turning up their noses at it. You really CAN get used to it. Not like it, but endure it. Like hairballs.
Thanks everyone for the kind comments and advice. It really helps to know I'm not alone in this, although I wish none of us had to go through this. It's so bad for our LO's too, even if they can't express it.
briegull: I was giving him Immodium regularly, but I stopped. I'm afraid it will make him constipated. Does anyone else do this? I'd be happy if he just went regularly and it was "solid". (Again, sorry for the gross out.)
all I can say re immodium is that it's kept my husband stable - and non constipated - for six months or so. Which is a lifetime in AZ mgmt.
re hairballs: I've finally found a use for crabgrass! Our young cat Chimi is kept indoors, and doesn't mind, but this is shedding time and he's been hacking. I potted up some crabgrass in a jar for him, roots and all, and he loves to chew on it, much more than those pricey grasses you buy for this. (we don't spray anything on our lawn) And no, bluedaze, I don't feed it to my husband.
Comparing notes as we do, some of us have seen changes to our spouses bowel issues during the course of the disease. meds/digestion issues/mal absorption, whatever the cause its a fact-. me too, i give immodium on a reg basis. i give it usually every other day or right AFTER a BM-this keeps him pretty much in control unti the next-and itworks just as briegull says. if you are on poop patrol, having some form of management is a good thing-. my DH has to take prilosec for acid reflux and this causes diarhea itself, much less with all his other meds, so i am never going to be without the immodium.:) use as needed you may not need one daily- i do know i CAN give 2 pills and go for long car trips overnite and feel 'safe'...thank you very much...divvi check with your dr or phamacist first as always.
OK, bluedaze, that's the second time this morning ALONE that you've made me snort coffee out my nose. Wouldja please post warning signs, or something?
briegull, doesn't the crabgrass make your cat throw up? I tried those pricey potted grasses once, and the cat adored it but I ended up with little green grassballs everywhere.
So speaking of hairballs, one of my all-time favorite Dear Abby letters came from a lady who had hosted Thanksgiving dinner at her home for a whole bunch of friends and family. The huge turkey had just come out of the oven after many hours of baking and basting, golden-brown and smelling marvelous, and she went to put some finishing touches on the table. Everything else was ready, and the large company was eager to chow down.
While she was gone, the cat, having the usual cat interest in roasting turkey smells, got up on the countertop, and promptly had a gigantic hairball all over the turkey. So the lady had to decide between rinsing off the turkey and serving it to her guests without mentioning the rather unusual method of "garnishing" it, or tossing the whole thing out and just serving the side dishes.
When I visited my husband this evening, I noticed his feet & ankles were swollen to the point that his Velcro shoes would not stay together. He had his hose on that the doctor prescribed...he wears them though the day & they are removed in the evening. I called the nurse about a hour ago to see how he was doing, she told me she was faxing the doctor about the swelling. Anyone else had this problem with their spouse?
Kelly, Please don't beat yourself up about how to manage this new phase. We all find this kind of thing no matter what the change is a slap upside the head, get into a bit of a panic before we figure out how to manage. And to think you have a little one who need mom and hasn't got her the way a normal 10 year old does has to be so hard for both of you. We all feel your discouragement.
On this poop problem..as well as the piddle issues..I was just thinking that with this AD, something must happen to cause a short within the brain that either tells the LO they need to go so they get the constipation problem OR the brain does not tell them they are done. This has to be within the sympathetic nervous system. We don't consciously tell ourselves "woops it is time to go to the loo" our bodies tell us just like blinking, swallowing and breathing. So it has to be that something shorts out with regard to the bathroom issues too, That is not to say there might not be a medical issue like a tumor or something but the message system gets faulty too. I can tell you at a late stage, my mom who had this bathroom problem could not remember how to push so she had constipation problems..( sorry about being gross but how else to get the point across : ( )
Kadee, We had the problem with swollen feet when dh wasn't able to walk as much. The doctor said to try to keep the feet raised, I did and it did help. He said it was because of him not being up.
My husband had the swollen feet and legs when he was pacing all day long...that added to the fact that he wouldn't lie down and would catnap sitting up gave him some really fat feet. His feet would not fit into shoes and I had to buy the really stretchy diabetic socks for him to wear. Once he couldn't walk and finally became bedridden we never had the problem again.
My husband's feet swell, and we put them up in the recliner and they go down. Then they turn purple, and we put them up, and they go down. Then they swell and stay swollen for a week or two no matter whether they are up or not....Then they turn purple again....
I massage them with lotion and he likes that. I don't have any answers....just that we share the problem....<grin>
My husband's feet and legs swell and turn purple when down and bone white and icy when elevated. Part of the reason is that the valves in the veins that help blood return to the heart are shot. The reason for the icy whiteness when legs are elevated is that a failing heart can't pump blood that far without the help of gravity. The poor souls lose either way.
Problems with swelling feet & ankles again. Went to see my husband today his feet feet & ankles are twice the size they should be. When he was in the hospital they went down, now they look terrible again. I fed him in his room this evening, so we could keep them elevated. He is able to walk around during the day. Any suggestions or thoughts on why?
Well, that blows my theory. My husband is in a wheelchair most of the time. i thought that was why his ankles swelled so much but you said that you husband walks around during the day. Strange, isn't it? For awhile, they put those compression stockings on him but they're not doing that anymore. Maybe somebody else will come along and help us out.
Well, what moon phase are we in? I know the weather can effect water retention along with sodium in diet. Check into meds and see if by chance any have that side effect. A lot of meds have sodium somewhere in their generic names. Just cause he is walking does not necessarily mean the blood is circulating well. I was told my thyroid problems can cause water retention - maybe his thyroid hormone level is low (which is common as we age and more so with this disease from what I have read).
Swelling in lower extremities, legs and feet, can happen for several reasons. As mentioned above salt retention, poor circulation due to heart or kidney problems are some of the major reasons. Carolyn you are so right about your husband, sitting for a long time will cause fluid to gather in feet. Important to change position, raise the legs of the wheelchair every few hours. Kadee, check to see if he needs a diuretic, especially if he has heart problems. If the heart is not pumping efficiently this will cause the edema in legs. Low sodium diets are always prescribed in such situations. Hope this helps.