We are truly ripping through the stages of AD right now. As soon as I can sort out an issue and create a system to deal with it, I'm facing six more. We are now learning how to deal with incontinence, both bladder and occasionally bowel. I'm doing okay with this. Its just the two of us in the bathroom after all, and she, blessed be, is accepting the assistance, even when she can't follow instructions.
She doesn't understand what is being said to her frequently, and needs physical direction as well as verbal cues to do simple things like getting into the car, getting into bed, sitting on a chair. She mostly paces, carrying objects from one location to another.
Most recently she sits in front of her meal and does not touch it, unless I fill the fork, put it in her hand, and makes sure she knows it is there. Then she continues to be able to perform the rest of the meal. Same if its a sandwich.
What is coming next really scares me. Really, really scares me. I don't want to feed her, spoonful by spoonful. The idea is repelling to me. Somehow it is different than showers, bathroom stuff, taking walks in a garden while she counts each step with semi-random numbers, following 15 minutes behind her putting stuff away.For me, those are doable, if not always pleasant I'm not sure why feeding is different. It just is. Has this happened to anyone else, that you just have one thing that seems impossible to do for your spouse? Is there something different about feeding your partner?
It really boggles the mind when you stop to consider how differently this disease affects each individual is t it? The landscape of this disease is the king of shape shifters... there were so many things that I thought I would never be able to do during the course of hubby's journey and I thought each and every one would be the deal breaker... the urinary incontenance, the bowel incontenance, the inability to get a decent nights rest, the teeth grinding and yes the having to help with feeding but for me the anticipation of each new decline was worse than when the decline presented itself...each time we just soldiered on as best as we could...over time the balance of how much I was doing for him grew to about a 90/10 split and not in my favour...for me it was a seamless transition...I just automatically picked up the slack in order to get the task at hand completed in a reasonable amount of time...from all that I have experienced firsthand and read from others here, we all seem to be very capable of doing much more than thought we could ever do for our loved ones...some days we don't mind and some days we don't feel we can carry on for another minute regardless of how easy or how distasteful our tasks were...you may find that even though you dislike feeding her yourself it may be easier than hoping she can manage on her own...do you have family or a neighbour who might be able to help you with a meal a few times a week or could you hire someone to do the supper meal for you...that might give you enough of a break to regroup a bit....I hope you're able to find something that works for you
Incontinence has long been known here as the game changer. You don't have that perhaps but for everyone it's something - even if it's just a last straw that broke the camel's back. I'm afraid that judging by the similarity of what I'm hearing and if feeding is a block, then years of doing this may not be in the cards.
Our AD just kept moving and within a year of roughly similar experiences, I had to put her in a home.
It's the 24/7 that did it. I had help 3 days a week for 5 hours each but there are 168 hours in a week and when things happened became relentless.
I can understand your concern about feeding. I hear other family member talking about how they became concerned about choking and that frightened them. One person said she knew what to do about the poo but had no idea what to do if he should choke. We're not trained for that are we? Talk to your Doctor, maybe you could hire trained staff to come in and feed your partner.
Lindylou, you can only do what you can do and to date that seems to be well above and beyond what should be expected from anyone. If the spoon feeding is a step too far then step back and take no guilt with you. The things that we have had to do for our loved ones are not things that I would want them to do for me so perhaps they would say the same if they could still verbalise their thoughts. For your sake, can you look into home help for meals and perhaps some other personal care?
Lindylou, my wife was at that stage from 2013 through this year. Sometimes when I'd put a plate in front of her she's start eating, but more than half the time I'd have to start her on the first bite. And then she was fine. Her occupational therapist at the time told me that was just one of the effects of dementia: she could be very hungry, even, but not realize that she could start eating, or maybe not remember how to start. This applied to getting into bed, getting in and out of the car, when she was still mobile, and so forth. I'd help her walk to her seat, turn her around until she was facing away from it, and then (during the time when she still spoke), she'd often say, "Do you want me to sit down?" It was heart-breaking, but I got used to it.
Incontinence was also part of the picture. I dealt with changing her diapers three times a day for three years, though in the later couple of years I had a professional caregiver for two of those daily changings. Usually though not always it happened in the toilet. Still, when you have to wipe someone, I count it as a diaper change. I figure I changed maybe a couple of thousand diapers during those years.
I have the same feeling you do about feeding her, though. Now that my wife is in an ALF, I time my visits to avoid mealtimes. I didn't always, but now that she seldom eats at all on her own, it practically kills me to do it for her. It's just too sad. I will say, though, that for some reason it feels different when I bring her a treat like frozen yogurt or a milkshake. She can still manage a straw, and on rare occasions she can hold and use a spoon. I'm okay sitting with her and helping her enjoy a treat. Mealtimes are for sustenance, but sometimes eating can be a pleasure, and it's one of the only pleasures she has left.
Lindylou, I don't think you're going to be able to find anyone to just come in and feed her and not do anything else. Plus, don't forget, that would probably be very disruptive to your own meal preparation and meals. I would suggest just trying to prepare simple meals as you always have, setting the table reasonably attractively, maybe putting a flameless candle on the table and playing some soft "dinner" music...whatever seems natural and pleasant for your home. Just sit down and eat, and as you would with a little one, reach over and feed her her bites of food alternating with your own. Don't give her table items that she could use inappropriately, like a sharp knife, pointy fork, paper napkin that she might try to eat, etc. If swallowing/choking issues start to loom, try some of the strategies used for Parkinson's or stroke patients--such as switch to a pureed diet and get a container of "Thick-It" to thicken her liquids to help prevent choking. I think if she just can't do it, let her get up and wander around, and just take a few minutes to enjoy your own meal. You may want to also consider, when you get a few moments away from her, having your own enjoyable snack or mini-meal--something you don't need to share with her or feed her. It's not selfish, it's self-preservation. And if it just won't work for you--if incontinence isn't the game-changer, but mealtime feeding is the deal breaker...well, hey, at least you tried everything. This type of thing is exactly why Alzheimers patients usually end up in a facility. (Where you continue to take care of them--just in a different way.)
I thought incontinence would be the issue for me, we never got to the diaper stage but like RSA had to help with Cleanup as she didn't know what to do. Still not in diapers but no longer has the connection between the feeling of having to go to the bathroom and what she is suppose to do the brain is not picking up the signal so she just holds it. Regular toileting is a must. Eating I remember anniversary over a year ago where I took her out to dinner and she could not discern the difference between what was on her plate and the flowers on the tablecloth. Like RSA I usually do not visit at meal time the transition provides a good exit time for me. She still eats well but in her own way Like Wolf it was not one thing, I didn't have regular in home help, but everything that just piled up.
You amaze yourself Yes I can do this, but then you realize the whole package is just too much. Like a high jumper you keep reaching for that next height then at some point you have reached as high as you can go. We are all different good luck lindylou you are doing an amazing job.
Lindylou, I placed my husband 3 years ago because he was constantly trying to get out of the house and away, becoming quite frustrated and angry with me when the doors were locked and I wouldn't help him leave. He was also not sleeping and becoming incontinent and all of that together became the deal breaker for me. Now, I do feed him his dinner, as he'll just keep his hands in his lap and open his mouth (reminiscent of a baby bird) otherwise. The feeding him does not bother me, but I don't have responsibility for any other of his cares. You are doing absolutely everything 24x7 and it's completely understandable that this might be the tipping point. I agree with Elizabeth's statement "at least you tried everything". I really admire your dedication, strength, and perseverance.
I agree with Rona. It's not just the one thing; at some point you realize the whole package is too much.
Fiona, That what I call my husband when I'm feeding him - "my little bird." He makes me laugh because when he wants me to give him something else on the plate he points to it, making me think that he is able to do more than he lets on. When he starts choking and has to eat mush, though, I know I won't be laughing and will not want to feed him.
lindylou, I agree with Elizabeth that it would be hard find someone to to just come in and feed her and not do anything else, but would the PACE program provide an aide to do several things, including feeding her one meal a day?
There were several "feeders" who came into the ALF at mealtime only to feed their clients. They did not do personal care. ALFs now charge if the resident requires assistance at feeding and it can be cheaper if you can find someone to just feed. One of the individuals was a retired nurse, another was a pastor's wife, another a retired guy, and others were members of a church. We all liked to sit at the same table and chat while we were feeding/assisting our charges. I think that finding someone is just a matter of knowing what network to tap. Lindylou, your church friends might be a start in putting the networking word out.
Some families at my DH's LTC pay people, ie PSW's and nurses to come in and feed their family member. Also some of my support group have done the same. They just feed and that is all.
In this area, agencies will not schedule a health aide for less than two hours. That's why I thought it would be hard to find someone.
If you don't have any luck going through the PACE system, may be you could hire someone privately. The Senior Center in our town keeps a list of private pay health aides. The Sr. Ctr. does not vouch for them but it has checked their references and criminal records. The rest is up to you. They usually charge much less than an agency does and might be more flexible about hours. I'm thinking that with an aide once a day, and lunch at day care most weekdays, you might be able to handle the other meals.
I forgot about the "feeders" who go into the nursing homes. But remember, if there is any choking hazard, they won't let the lay people feed the patient.
A member of my support group from a couple of years ago told me when her DH was living at home she was unable to get him up in the morning and she had help who came in and got him out of bed, washed and dressed. They came back at night and put him back to bed. No feeding! He has passed two years ago.
I have read all your thoughtful comments more than once. I want to thank you so much. Right now 29scorpio's comments are resonating with me. Anticipation may in fact be worse than the actual event when it arrives. And I will find that I am just able to "soldier through" when the time comes. I did gently thrust my partner's toast to her mouth this morning so we could get out the door and to the PACE program at a reasonable time this morning. She ate it without complaint.
Don't know whether to be happy or frightened that our changes are happening so fast.
It is obvious that her walking days are numbered. I have and still let her walk around the house, but now keep an eye on her most all the time. With my son's help this Thanksgiving, I am rearranging furniture so that for all essential purposes we won't be using the front part of hour home when it is just the two of us together. Then I will be able to keep her close to my sight line. This may be only be a temporary thing, though, and unnecessary if/when she no longer walks independently.
It takes the aide and me both to get her showered in the morning.
At her annual PACE care plan meeting this week they said her mini mental score is 3, and they would not be doing that test again. Do you think?! At an annual meeting it is easy to think back at all the changes in a year. A year ago she made the decision herself to join the PACE program in order to make life easier for me. Now she has no recollection of where I am taking her in the morning, nor what/where home is when I pick her up. And when she wanders can't find or recognize the bathroom or bedroom. A year ago I could leave a note for her and head off to the bank or store for 15 minutes. Now I have to check if I haven't seen her in three minutes.
For those of you concerned for me, I am grateful. I want you to know that I am using myself as a bellwether. When I am not functioning well I will make the changes I need to survive. I continue to be determined that this disease will not take me too. Occasional episodes of panic aside, I am doing okay. And aside from occasional grumpiness that occurs in the middle of the night, my partner finds me a calm and soothing person to be with. She was even able to use my name at the neurologists the other day. I do like it when I'm not "mum".
I thought I was doing well and was handling things just as I should until my DH's geriatric nurse decided to refer me to the social worker in their group. I went there ready to tell her I sure didn't need her. Was I wrong!! I totally fell apart. I had no idea I was so lost, so close to a break down. DH went into LTC shortly after and it has taken me three years to get even close to being in a good place. I was so sure I was able to handle what I was given. His care. Friends saw my distress and tried to tell me but I was so sure I knew better. We can't see our distress as others can. Be careful for yourself. You are important!
I echo Jazzy's comments. Take care of yourself Lindylou. I seem to be doing well then I realize, like yesterday, the little bumps in the road now just seem to affect me much more. The resilience just isn't there instead of bouncing back seem to be just flat no bounce. Today will be better.
I also experience days/weeks when I cry all day, need sleeping pills to help me sleep, feel depressed and highly anxious - and my husband has been living in Memory Care for over 3 years. Not sure if it's an effect of the full moon, but I just am more gentle with myself during those times and (I'm sure much to the relief of family & friends) stay away from people except my husband and his comrades.
Lindylou, I think you are doing a heroic job of keeping your partner safe and in her home. I'm glad you are determined to survive this disease and are keeping a pulse on your abilities to continue your at-home caregiving. Bless you.
lindylou, It must be a shock to see your partner move through the different stages of this illness quickly. I think we can all understand you feeling about not knowing whether to be happy or frightened by the rapid progression of the disease. About her walking problems, someone -- I think it might have been elizabeth* -- who cared for her husband at homes said that his care got much easier after he was no longer able to walk.
Yes, Myrtle, it probably was me. It keeps them out of a whole lot of trouble, when they become bed bound. (Sorry--gallows humor there.) Of course it is a lot of work in terms of the bed care, but at least you know they can't get out of the house and wander into traffic, or get themselves around the house by holding on to furniture and walls, tottering, falling, requiring ambulance calls, and in general making you a nervous wreck.
She has begun refusing to take her meds. She who has been taking pills for seizures since she was 26 cannot remember what a seizure is, or why she has to take pills. We had a couple of ugly moments when I forced her to take pills. It was not pleasant. And I decided I would never ever ever do that again. So I bought a mortar and pestle, checked to see if her pills could be crushed, and now I crush the pills and put them in watermelon sherbet which she usually loves. This morning she fed herself half the sherbert saying yuck between each mouthful. And I fed her the last half, spoonful by spoonful. Way less painful than getting her to swallow pills already in her mouth and not spit them out. You never know. Your worst fear can be the least unpleasant alternative.
To Elizabeth and Myrtle, I am starting a new discussion on ambulation within the next day or so. Trying to stay on topic, as Joan would wish.
I'm just wondering if anything could be put in liquid form (not sure whether that would help or not), or in the form of a patch. Just brainstorming. Some meds can be put into suppositories, but of course that would be more for the bed- bound, unresponsive patient.
My husband has refused to take pills for years. In the past, he would pretend to take them and after the nurse turned away, hew would pluck a perfect pill off the tip of his tongue. Now they crush them and give them to him in applesauce or yogurt. If he suspects something and refuses that, they put them in ice cream or a small "sticky" sandwich. like PB&J.