As I look back over these past 20 weeks of blogging, one thing becomes clear: I'm having a lot of trouble finding the positives in taking care of Dad at home. So far, I've talked about the expense of taking him in, my worries and anxieties, my anger. And that's just the tip of the iceberg. I haven't even touched on the exhaustion – physical and mental – the guilt (toward both my dad and my husband), and the sheer aggravation I often feel.
Where's the joy, the laughter, the memories of good times shared? I hate to describe caregiving as a grind, but... in the day-to-day grind of things, is it ever possible to see the positive forest for the negative trees?
In discussing the issue with my best friend, Mitzi, I started to wonder if part of the problem involves a near-total loss of control over my own life. When I'm spending time with Dad, I feel so much of my energy is spent on battles of will.
Today, for example, Dad needed to get to the barbershop, and I needed to go grocery shopping. We thought we'd go out to breakfast before the barber. On these points, we agreed.
After Dad's haircut, we headed for home because I've learned it's better for him to take a break between errands. I heated him a cup of coffee and then checked my e-mail. An hour later, I asked him if he was ready to go grocery shopping yet.
"Well, I am," he said, "but first I want to go outside and water the sunflowers."
My heart sunk. This would delay us by at least an hour, and it was already 1:00 in the afternoon.
I tried to negotiate. "Why don't we go to the grocery store first, and then you can water the sunflowers when we get home?"
"No," Dad shot back firmly, "I need to do it now. It will only take me a few minutes. But first I have to change my shoes."
An hour later, the watering finally finished, I suggested we go grocery shopping. No, Dad said. He needed to feed the birds. It would only take a few minutes.
Argh.
"Why does your dad always get his way?" Mitzi asked.
Good question. Because he's my dad, and I'm his daughter. Because he was a highly authoritarian father, and I still turn into an anxious little girl whenever I feel I'm challenging his authority. And because on those occasions when I assert myself, Dad gets angry and then sulks, which unnerves me.
We eventually got the grocery shopping done, so I suppose there was no harm done. But I'm weary of these power struggles and eager to find a solution.
RE: Power Struggles I learned a while ago that if I asked mom what she wanted to do, I was asking for trouble. I stopped asking mom if she was ready. I stopped asking her if she wanted to go with me. Dementia affects the part of the brain that understands the "niceties" of going along with someone else's suggestions. Now I say, Mom, let's get ready to go. OR Mom, we're going out. Put your shoes on. I've also learned that to leave the house, I should plan 30 minutes ahead(allow time for bathroom, shoes, purse, walking to car, etc) and a complicated trip to the doctor's office is now a three hour comittment. My life got much easier when I accepted that mom was not going to change - I HAD TO CHANGE. I read in one of those caregiving books that someone with dementia "always gets a pass." Best of luck, we are all here for you.
Elizabeth, I can identify with your plight. My wife cared for her Dad in our home for over 5 years following his stroke, and has cared for her Mother the past 18 months following her renal failure. She is totally dependent upon my Wife for all daily activities and bodily functions due to her immobility. I help out all I can after work, however, it is a 24/7 grind for my wife, and it affects the entire family. After 44 years of marriage, I fully support my Wife's resolve to be caregiver for her Mom, but it takes a toll on her when she cannot attend her Grandson's ball games, or take any kind of vacation. Routine functions such as going to Church, the Zoo, or enjoying a restaurant meal are rare for her now. She doesn't mind the physical side, but the mental side is murder, and I am her sounding board. On the upside, my love for her grows stronger each day, and I only hope that I go quitely in the night when my time comes to meet my Lord. Love your Father and meet his needs, but stand up to him when you feel the need, and insist upon making time for other loved ones, as well as yourself. Remember, he is still your Father, but you are no longer 12 years old, and you are the adult now! I know you have heard it from your loved ones, but now it comes from an unbiased source. Keep the Faith! JPJ
Elizabeth, I understand about the cost of Assisted Living and I worry every day that someday Mom will run out of money before she's ready to leave there. I hate that there aren't more benefits out there for AL. Many patients with dementia have few medical conditions, yet the only answer is home care or a nursing home. In my mom's hometown that was the only option--the nursing home, so I moved her 900 miles to the state I live in. I have even looked into some church run assisted living centers because their rates are much better, but the nearest one is 90 miles from me. I hate that older Americans with dementia are denied Assisted Living based on income. It is needed and with all of us baby boomers the need is going to grow. I honestly don't think I could do all that you and others do. I spent the whole day with my mom today and we really had a good time, but it was nice to come home and spend the evening with my husband while my mom enjoyed hearing the Bell Choir at her AL. Everyone should have the CHOICE regardless of what they have in the bank. If Medicaid covered AL it seems it would make more sense as many people with dementia do not need skilled nursing, but end up in nursing homes anyway. AL would be less expensive for Medicaid IMO.
I envy all of you who are able to afford assisted living. This is what I would wish for my parents. However, due to various factors (neither of them is college educated and, thus, never made a decent wage; both have had intractable, expensive medical issues), their life savings are not enough to sustain them in assisted living for more than a few months. It saddens yet enrages me that two honest, caring people who worked hard all their lives cannot afford decent care at their most vulnerable time of life: extreme old age with dementia. I wish I had a solution for this, but I don't.
@chadeaux: Have you considered a psych assessment for your mother? Do you (or any other relative) hold power of attorney? As my next blog post will reveal, I have a lifetime of experience dealing with mentally ill relatives. The fact your mother keeps a knife nearby is, to say the least, dangerous. You cannot place yourself in such danger, even to care for your own mother. I am sending you warm, healing thoughts.
It's interesting that Meh likens taking care of a parent to a difficult child, because I came to that same conclusion and it has made things much easier for us. I moved Mom in with me last Oct and one day as I was teaching her to wait for the little man (walk sign) before crossing the street, it occurred to me that we have come full circle. Luckily for me, I have the experience and skills for dealing with children with difficult temperaments (I actually ran a support group for parents when my son was little) and I have been able to apply many of those same techniques with my mom. Do we still have bad days? Of course, but I remind myself that I am doing the best I can and for now at least, this is where Mom belongs!
Yep, the parent is the authoritive figure and we are the child. But, I do not owe my life to this and then it ultimately destroys the last amount of time I have with my mom. If I am angry because it is not working out then maybe I had better see the real picture. It is OK for our loved ones to go into this stage of their life. It is natures path. My mom is now at assisted living and if she calls me with a problem I tell "press the button!", so the caretaker on duty can attend the problem. If she does not get what she needs I call them and tell them that and they get right on it. I come to visit, we have a lunch served to us, no mess or cleanup, we go for a walk, store, etc. I give her a hug and kiss goodbye and back to my home. Is it perfect? No. Is it better? Oh, yes. She has activities to go to all day. They are helping her get there and they make sure she gets to her meals. I still stay on top of this, but we have healthy space. I wish I had gotten her into it sooner so she could of enjoyed the activities easier.
The power struggles are stressing. The almost constant test of wills is debilitating. Mother insists everything is to be done her way "because this is MY house!", has even threatened to exercise an extreme power play by having me "committed" because I refuse to concede to unreasonable demands. She is able bodied, and I told her there's no reason why she can't clean up after herself. She's very suspicious - feeding her mind the offerings on TV convincing herself that she's psychic and a detective, and everything I do is suspect. I suggest other activities and different TV shows, but insists she will watch what she wants because, again, "this is MY house!" She has villified me to the family. I have kept quiet hoping they would see through her but she's very convincing - she has lots of time to solidify her imaginings to convey to them. This sort of thing happened to an aunt (her sister) caring for my grandmother, and she had been villified to the family and no one will speak to her. Mother has verbalized her comparisons between that aunt and myself, saying I'm just like her because I'm in the same position. She would sit in front of the TV and repeat things characters would say: "Did ya hear that? He's not evil, you are.", and "Did ya hear that? The Dark Man - he's coming for you.", and on and on. She keeps a knife with her at the kitchen table, one at the coffee table, and one on the end table next to her chair. I believe this is more a psychosis than Alzheimers. A lot of the time we do get along fine, but little passive/aggressive displays several times a day tell me the game is still on. I know she's not happy with how life has turned out - believe me, neither am I, but I try to make the best of it, and try to get her to understand the "games" she plays are hurtful and damaging to our relationship.
As I read all the letters and comments from you fellow dementia/alzheimer caregivers I can't help but wonder what has happened to cause so many people to have these terrible conditions. I know in my Dad's case, it was brought on by a stroke, but it is rampant among so many of my friends as well as you on this blog. I appreciate all of your comments and insight. I guess we are all in a position to support each other and I appreciate that that is indeed what we're doing. Hugs to all of you.
Kiks' girl, you are so right about some people not being cut out for the long haul. I tried having my mother here, but it was impossible. She's always been somewhat self-centered and she was turning me into her personal whipping post. I could see my friendships, my marriage, my kids, and my grandchild were all being put on the back burner while I catered to my mom. I love her dearly, and I always accepted her the way she was, but it became impossible to please her, so she went into assisted living. In many ways, she has more freedom there. I see her every day and she still complains, but now I know that when I leave I can have a little bit of peace. I realized today that even when my mom was in her own home she did a lot of crabbing about that, too! The staff at the AL facility tells me she is very cheerful and helpful there. I have become friendly with some of the other residents and they say the same thing about her. I can give her so much more love knowing that I don't have to worry about her 24/7. I don't mind visiting there because it's so pretty and peaceful. I love talking with the other residents and they have told my mom to be nice to me! I have learned that my mom is shy! I never would have thought it, but she is. I try to get her to join in conversations and she's often so timid. With me alone, she's a bulldozer! I couldn't care for her 24/7 and I'm not ashamed to admit that. I felt trapped and like I was getting real old real fast. I wasn't having fun anymore. I barely had any time to even shave my legs because I was afraid she might decide to "take a walk". I am so greatful for the ALF where she lives. I hope she can afford it for as long as she needs it because it's been the best thing for all of us. It's like a family there and the staff is wonderful. I feel like everyone has benefited from her move there. I loved the honesty in your post. I used to feel like I was a "quitter" but now I know I was just being fair to myself and the rest of my fsamily. I'm needed by more than just one person and I also need MYSELF! Alexandra--- I read the 36 Hour Day and it was very helpful. I could never have kept up with all of the suggestions it offered, but it did give some very good tools to work with. I now get the biggest kick out of watching my sister disagree with my mom about something. I learned a long time ago to smile, nod, and move on...
Elizabeth, thank you for taking your time to blog. I came across it as I was trying to arrange for my parents to come back north after my brother decided that he didn't want to take care of them anymore. He left my 86 year old mother to fend for herself after coming home from the nursing home after breaking her hip. My 95 year old father had gone into the nursing home the day they brought her home. I have finally been able to get mom home and she is going into assisted living this week. She has only been in my home for two days. I don't know how you do it. The hardest part was leaving my dad in the nursing home 500 miles away with only my brother there to visit. I am working to get him placed back here but it has been a long 2 months. Bless you.
I agree with MEH, give them options that way they still feel in control. Elderly people do not have a sense of time like they once did. Lastly, just do your best as when they do pass on, you can know you did your best instead of "I could of or should of done this and that' the art is drawing yourself a fine line that works for both of you. If caring affects you and your family or even your sanity and zapping your energy, consider getting a (suitable) carer with experience. At first your parent might not tolerate this but as they get to know the carer, they will even look fwd to days out. They can go to parks, cafe's and people watch or just plain give you a break to re group. 2/3 hrs, 2/3 times a week will make such a difference. Well done to all of you who look after your parent/s. And well done to those who visit their parent in nursing homes. Just find a balance for both of you and as deterioration sets in more and more, tweak your decisions by getting professional advice without feeling guilty that you are not coping. Without a healthy balance, both of you don;t get to enjoy one another.
Thanks so much for all of your helpful advice and moral support. I love hearing your stories! It makes me feel less alone. Alexandra and MEH, thank you for the book suggestions. I will definitely check those out (she says, while internally asking herself when she will have time to read them!). Kiki's Girl, I've found my experience mirroring yours, in some respects. Thank you for sharing it. Anonymous, I also use the ploy of putting Dad off; he is just now getting to the point where he truly won't remember something later. Or if he does, I just put him off again. Anyway, thank you all so much for reading and commenting. It's nice to know we're taking a shared journey together.
You know, I am not currently a caregiver for a dementia patient, though my father has been diagnosed with AD. He is still able to live pretty much on his own and his gf is helping out a lot. But the situation you describe sounds like the kind of power struggles I was having with my six year old daughter. I found a great way of dealing with that in a fabulous book called "redirecting your childrens behavior" by Kathryn Kvols - you give the person who wants to be in control a choice of two options, both of which are acceptable to you. Example: instead of asking if he is ready to go do the shopping now, you could try "it is time to go to the grocery store now, should we take the car or the truck?" This way of phrasing things worked magic on my kids - they would make the decision, but within the limits of my options... In any case I wish you all the best. M.H.
Elizabeth, I can totally feel what you're going through. Although my Dad is in a nursing home and I only see him every 3-4 weeks as he's a 4 1/2 hour drive from me, I get so frustrated every time I see him. He's angry because he's "locked up" and wants to go and live on his own. He blames me because I'm his legal caregiver. He "rules"! And for the very same reasons you gave. Because he's my father and he was always very authoritative. I've never learned to talk back to him and I probably never will. If he wants something, he gets it because it is after all, his money, and he doesn't know how to make a purchase on his own anymore. I've managed to delay his purchase of a new truck until "the next time we're here" and fortunately, he forgets.(It's not going to happen!) But if he wants to do something, we do it. Even if it isn't something we want to do. I think a lot of what we do is out of guilt...because we're 'normal' and they aren't? Who knows. At the end of the day, the feeling I have most is an extreme sadness that this person who was once so active and vibrant, has turned into a whiny, crabby, old man/little child, who starts talking about one thing and ends up on a totally different subject, without even taking a breath. I just want to see him have a happy time when I visit him and it just doesn't seem to happen very much anymore. I'm sorry my reply turned into a story of my life, but in the end, I just want you to know that I totally empathize with you and wish you well in your continuous care of your Dad. When it's all over, you'll probably be glad you had this time.
God bless all of you. You have been a wonderful resource for me.
For five years my much-loved mother lived with us (me, hubby, two kids). She and I always shared a high degree of empathy and were best friends all our lives. So as she declined, so did I...nearly housebound, waiting for the next emergency, giving my family the barest as-needed care, and not taking care of myself at all. (As I write this, I haven't been to the dentist in two years.) Six months after my mom started taking antidepressants, my panic attacks led me to a similar prescription. As her ability to focus and concentrate ebbed, so did mine. As she started spending more time bedridden, I hid in my own bed. My kids knew that was where they'd find me - how sad is that? Perversely, as she lost more than 40 pounds, I gained more than 40. The last thing my mom would ever have wanted was for my family to suffer because I couldn't take care of her AND them. I've decided that some people are cut out for caregiving and some are not. I did my best for five years and then had to listen to everyone around me and do what was best for all of us. She's been in a memory unit at our local veterans' nursing home and she is thriving. Meanwhile, I'm trying to find my way back to my family and myself. Dementia is a different journey for each of us, but I have surely appreciated the support I found in reading this blog. God bless.
There are no rules in this most difficult phase of caring for parents and loved ones at the end of their lives. We do our best even though most times we are questioning if we really are. Put the whips away, you are both doing a great job, each in your own way. I cared for my late father at home for 1.5 years. I was 41, an only "child" and single. My Dad, 93, separated from his wife, with CHF, dementia and all that goes with it. I did my best to manage all the details of his care in his home and strike a balance between the "administrivia" and simply sitting on the couch with him to talk or just share a hug. I felt I was constantly failing, angry, exhausted, my life was over, bereft... the list goes on... a wide mix of sad and sadder. Almost three years after he died most of what stays with me is what I now believe to be the most important --- hug more, laugh more, just hang out more... does not matter if some of the details fall by the way side... it's the heart time that matters -- even in dementia people feel love. I will say however that I fully remember how overwhelmed and at the end of my rope I felt while caring for my dad... this graceful place I am describing was not always accessible to me in the moment. There are no rules... and I can guarantee both Elizabeth and anonymous above that you are doing everything to the best of your abilities... the roads look different but the love is the same. My heartfelt wishes to you both for strength, courage, grace, a sense of humour (essential) and love. Elizabeth -- it is a grind -- that's the truth -- and every moment presents yet another challenge (a fall, a bathroom accident, an angry outburst, sadness that is heartbreaking, etc.)-- it is very difficult if not impossible to stay the course of your own life and not feel like you're drowning -- your feelings are completely normal and valid and well, there is nothing really to do but take a deep breath and keep moving... and hugging your Dad as much as possible.. you might consider also trying "bribery" with your Dad -- if we do this now Dad you can have XX later... or making it seem like you need him to do whatever the task is and that you cannot accomplish it without him thereby giving him a sense of purpose and a reminder of the original roles you once shared -- he may not recall this transaction five minutes after you've agreed and you may have to repeat it 50 times but it may get you out the door when you want...used to work for me... but as I said there are no rules...good luck to both of you ... know that you are thought of with love by a fellow daughter in this world :) PS a therapist gave me this book.. it was the most valuable resource for me at that time... don't let the title turn you away... it is about caring for someone at the end of their life and it was hugely helpful to me. It's on Amazon. The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, 4th Edition by Nancy L. Mace and Peter V. Rabins (Paperback - Oct. 9, 2006)
Dear Elizabeth, Thank you for your vulnerability and courage in taking time and energy to post your blog. I've been following your experiences as I care for my dying 92 year old father, 90 year old mother with dementia, and 94 year old mother-in-law. With three parents to care for, I opted out for assisted living and nursing care where some of the residents are younger than my 65 years. You are giving your father the gift of your time, care and devotion that only a daughter can give. Lovely words don't get your life, energy, or time back. I admire your devotion. I couldn't do it! Hang in there. Pat